My journey thru Neuroendocrine Carcinoma Cancer (Carcinoid) Hell & Adventures Walking thru it.!

What it is like to be on a Clinical Trial? A day in the life of a patient!- reprint from Sept 2008!

2010-03-04T15:32:00.004-05:00

I thought I would not post another STUDY data or article (even though I have 2 great ones on PRRT from Bad Berka from two Md's in the hospital that are brilliant! I will post it another day).

Instead of writing something new, I thought I would grab a posting I made in 2008 while on a STUDY/EXPERIMENTAL TRIAL with MDAnderson cancer center. I have seen a number of posts on the importance of getting on a clinical trial and as such, thought this would be of value. It is from Sept 2008 while I was on Pazopanib oral medication daily. It was a VEGF inhibitor and the drug that changed my hair style from semi blond/OK color (right- Sept 2007-- left--to deathly white Jan 2008!) Pazopanib has been approved, as most of these drugs are rather quickly, for renal cell.

If interested in joining a clinical trial, I have a link on the left hand side however, one would go clinicaltrials.gov as a start. Some of the Carcinoid Foundations also have a link, or space, to get information about a study.

Search! I did and found pazopanib and also did RAD001 over 4+ years in MDAnderson in Houston (I racked up monthly visits by plane from Canada and USA for close to 5 years...on my own pocket! I learned to find the cheapest flight and love Southwest Airlines for their rates!)

Here is the posting. I hope it helps you understand the process and how its like for a few days on a Clinical Trial.....

NOTE: My main advice is to look at PRRT therapy as your first option! It changed my life, and gave me the best results, and hopefully longest duration, compared to any systemic treatment available. And yes, with a very safe profile!
Write me and I will show you study after study supporting its safety!

What life is like on a clinical trial?

I just got back from my trip to MD Anderson Cancer Center (MDACC) in Houston Texas -which btw, is rated #1 cancer hospital in the us as rated by US News . http://www.mdanderson.org/ ).

As background, I have been going to MDACC for years- from 05-07, while I was on the experimental medicine, RAD001. I went back to MDACC Sept 07-until now (Sept 08), while taking Pazopanib.

This recent trip was the first since the hospital and Dr @ MDACC agreed to my request (POST NOTE-YOU HAVE TO ASK AND SUPPLY INGO AND GET THE CLINICAL NURSE ON YOUR SIDE-- REASON FOR EXTENSION? I FOUND THE GLAXO WAS EXTENDING THE STUDY, BUT ONLY TO THOSE ON 'OFFICIAL GLAXO STUDIES- NET TRIALS WERE NOT OFFICIAL- HENECE HAVING TO PAY FOR LAR 30 (SEEMS LIKE NOVARTIS WOULD HAVE COVERED THAT!??)
to extend my experimental cancer treatment over the 12 month period.

To give you an idea of what life is like while taking experimental medicine, the process requires I take the experimental medicine daily (pazopanib - 2 pills a day/oral which is great!).
I also am required to maintain a detailed, written diary of what is happening with my life- medications, blood pressure, symptoms (fatigue, diarrhea, many other symptoms, and rated-- high to normal), side affects of drug and cancer, etc.
I keep this information daily and give the information, and any unused pills, to the Clinical Research Nurse, during my monthly visits to Houston Texas and receive a new data sheet.

Separately, I also take (required) a monthly injection of sandostain LAR30- http://www.us.sandostatin.com/info/about/home.jsp - which, for this study, I am required to take, BUT, I need to do it on my own expense, as part of the study requirements (RAD study it was part of the study and given during my visits for NO COST!).
This drug (LAR 30) is given via injection, in a very large and wide needle :( (see pain on my buttocks), due to the thickness of the medicine. The drug has demonstrated with some patients benefit by inhibiting the growth of carcinoid cancer in midgut tumors. Its primary benefit has been to alleviate symptoms for those suffering carcinoid syndrome.

I take the LAR 30 injections monthly from the offices of a local oncologist, a cancer oncologist in Cincinnati, and also work with his Clinical Nurse, who responds to any of my many questions and issues in a flash! She is wonderful.

I take a blood test twice a month, and a urine test monthly, as required by the study. To access if the drug is working, every 90 days I get a CAT SCAN http://www.radiologyinfo.org/en/info.cfm?pg=bodyct&bhcp=1 of the abdomen and liver, as well an X-Ray of the lung. I also do a 24 hour urine test. I go to the hospital for blood test and MD visit on a monthly basis. The CT SCAN is difficult on me now and is very dangerous to my kidney due to the contrast dye. I went to a local nephrologist to get directions on how to protect my kidney during the scan (iv hydration, use of less harsh dye, etc.). I took the initiative to ensure my kidney was protected. He prescribed a number of items which were not being done. It is on a earlier posting on kidney protection (must read!). Below is the posting and link on the process and how to protect kidney (including a UTUBE video on what happens to the kidney- this is important if you have one kidney or your functions are not working up to par--- see me!)

http://www.renalcarcinoid.com/2009/04/contrast-induced-nephropathy-clik-here.html

Key learning- study what is going on, get opinions from experts in the field- PROTECT YOURSELF. ITS YOUR BODY!

The CAT scan is the most difficult part of the test for me. The kidney protection process calls for me to be hydrated via IV for 4 hours, prior to the procedure, at the hospital. I am hydrated because I have one kidney, and the CAT SCAN contrast dye used to see the tumors, is very dangerous for the kidney. Since I had the right kidney removed in 2003, I need to be very careful with my one remaining, so the hydration helps in preventing kidney damage from the contrast. In reality I should not be given the dye but that is only way it can be read by MDACC.

Prior to the CAT the scan, I have extensive blood test. I do this in the am prior to the hydration.

Once the hydration is over- 4 hours- and I am ready for the CAT scan.
I am required to drink 3 large bottles of a chalky like liquid, on an empty stomach, during a 2 hour time period. The liquid is terrible, it makes me nauseous just by thinking about it. It tastes like thick milk of magnesia:( They have recently made some changes to the liquid, adding a flavor...banana, berry, etc. However, all that does is try to cover up the terrible taste, without success.)

Finally, when I am ready for the scan, they set up another needle in my vein (this would be the 3rd needle stick if all goes well, but routinely its a hit and miss thing throughout the day so normally, its like the 5-7 stick in the arms by then) in which to run through the contrast medium (visipaque)http://md.gehealthcare.com/visipaque/ during the procedure. The contrast is run very quickly, so the MD's can get a very good view of the liver lesions. While the contrast is running through the body, it feels like your whole body is on fire from the inside, and you can "taste" the iodine. It is a very uncomfortable, terrible feeling. All the while the machine is telling me out loud "breath in, hold your breath, now breath out" while you are lying on a table which goes back and forth in front of the scan "camera".

The machine voice instructing you is of a man. I wish they would let me select a voice and a situation, just to break the stress. I would pick a woman, with a sexy French accent, that talks in a french accent and suggestive manner. It would be great to have a voice, of a french accented woman, in a soft and lovely voice, instruct me to "now my dear, if you would like, hold your breath for me....... now release, ohhhlalala thank you berry mush, BTW, anyone ever told you that you are a berry handsome looking man, even with a enema tube running out of your rectum?!?!?"................ :) Good now? Come on GE, get with the program...!

And, as a final "kicker" to the day's procedure, I also have a tube insert in my rectum and receive a barium enema, while the test is going on. This is to let the MD visualize the anus and colon for signs of cancer. It is a lot of enema.....

The CAT scan itself takes about 25 minutes, however, with the preparation, blood tests, and hydration, x ray, etc, I typically arrive at the hospital at 7am, and finish the CAT scan late in the evening (last time it was 10pm). It is a "I am rung out" day.

The after effects of the CAT scan are very difficult for me. I normally now stay at a nearby hotel and begin to vomit and have watery, excessive diarrhea pretty much all night. The taste of the scan liquid, the dye and the IV flushes are with me all night, and into the the next day. Its what I call "hell night" and part of the curse of cancer.

The next day is the hardest part of the CAT scan exam really, it is the day I visit the doctor for the results. I typically have the appointment in the morning,the day after the scan. I feel terrible as I have had a sleepless evening of vomiting, diarrhea, my arms and hands are black and blue from the many blood tests, IV's and scan injections from the previous day, I still have diarrhea, and I can still taste the liquid....I want to throw up. I am also carrying a large brown bottle of the urine I have collected the previous day 24 hour urine test.

I drop the urine bottle in the lab room on the second floor (which is packed with people waiting for a exam) and I then proceed to go to the 7th floor of MDACC where my MD is located. I sign in with the receptionist, confirm my appointment, and then pay my $25 co-pay before proceeding (note- although the drug is given to me for free, I am financially responsible for everything else- MD visits, tests, scans, transportation to and from, etc..... note to self- cancer kills you physically and financially, but thank you employer, for health insurance which offsets the medical expense!).

After I settle with the co pay, I proceed to another office where I have my vital signs done(weight, temp, BP). My BP pressure is always high before I meet the doctor (white coat syndrome), and I will always be asked by the technician "why is your pressure so high, are you nervous?
After I finish with this, I go and into the main waiting room where typically it is full of people waiting to be seen by one doctor or another, all with cancer.
Observation--- there is no downturn or recession in the cancer business! The damn place is PACKED with lost souls like me waiting to be seen for their 15 minute appointment with the MD.

Recall, the CAT scan test is done to demonstrate to the MD the condition your body, and what the tumors are doing, and whether the meds are working. As I wait for my MD appointment, it is one of the most difficult moments in my life, akin to waiting for a "death sentence verdict". I compare it to waiting to hear from the Governor while in death row, whether you will be given a death sentence reprieve or not, at least for the time being......

As I sit in the waiting room, I start going through the worse case scenarios in my mind. I have discovered if I go through, and prepare for the worse the MD and the scans will say prior, I am mentally ready for anything thrown at me. I am an accountant and I follow the a motto from my University of Tennessee at Chattanooga, Cost Accounting Professor, who told me, when dealing with a business, "anticipate no profits and be prepared for all losses". I await the results of the scan in a doom and gloom mood, accountant mode.

Within a period of 15-45 minutes, I will hear my name called out and I am escorted to an small exam room in another lobby. There, the nurse who has called me in, will interview me and ask me some questions such as:

Do you have pain, if yes what is rating between 1 to 10 (I usually say "4'- 2 pts from the cancer and 2 pts from the tension)
How is you eating? "Not good"....

Do you use the bathroom regularly, do you have blood in your stool? "yes, a lot and yes, blood". "And oh by the way, I need to use the bathroom for a minute right now so can you point the way to the bathroom?!?!" In I got to throw up and or urinate.
"Your blood pressure was a little high today, are you nervous"?!?!?! :(

She then completes her work and tells me the doctor and/or clinical nurse will be in soon, and leaves. The room is a small room, with a desk and PC, and a exam bed. There is no piped in music or TV programing.

You are left alone in that little room, by yourself, waiting for the doctor/nurse to arrive. I typically bring a magazine in with me, and try to read it while I wait but I can't concentrate. As I wait and time goes by, I fear the worse and now begin to pray on overdrive (I am roman catholic)--"Hail Mary's" and "Our Fathers" are stable faith prayers I repeat while nervous. I begin to feel as if I was on a air plane, and the pilot just announced "I have asked the attendant to take their seats immediately and that you buckle your seats belts tightly, as we will be going through extreme weather"!!!!!! and suddenly the plane starts to move and gyrate in ways the aviation engineers may not have planned for......"hail Mary full of grace, the lord is with m....."

Finally, in what feels like an eternity, I hear the footsteps of the doctor and clinical nurse headed into my room, from far away. My heart starts to sink and my beats per minute go up to 150-180 as I hear them get nearer. And then, they arrive. Both Dr and Clinical Nurse. They are very professional and she is very caring, and typically they review the results of the scan, and action plan with me right away. At this time I am typically in a state of fear ("deer in headlights") so at times its hard to understand what they are saying....but I am searching for operative words as they talk to me and try to hear though the mental fog I am in--- "good news, stable, positive response, continue on study"....... I don't want to hear " new growth, bad news, interval tumor progression, etc".

If all is well, as it has been the last 12 months on Pazopanib, Dr will tell me that he recommends I stay on the study, and gives me another months supply. When this that happens, I feel as if I have just fought the dragon, and kept it at bay, for one more month!

However, immediately after the "internal celebration", the planning for my next monthly trip (reserve the flight, car, etc) starts. The interim appointments (between the 90 day scans), are fairly routine and tolerable. A blood test in the morning, see the doctor 2 hours later, diary exchange, refill and rush to the airport.

So, in summary, my appointment on 9/9/08 (no scans this month!) was positive and uneventful (which if a good thing). The nurse talked to me about the extension study, which they have graciously let me participate in, my blood test was normal blood (almost low WBC, etc).-
FYI- I stayed on this study through Jan 2009 and then they took me off the study after a negative can.....the tumors were growing! If you go to this month on the blog you will read more.

However, at the end of this appointment in Sept 2008, the Dr checked me (poke, feels, and looks- 3 minutes), everything was OK! He recommends I stay on the test another month, wished me luck and left. I received a refill prescription of Pazopanib, picked it up on the 10th floor pharmacy, then rushed to the airport (Houston Hobby) to catch a Southwest flight back home (to Louisville and then another 2 hour drive home!). When I get home, I start planning my appointment trip/flight for October :(.

To summarise, although I am suffering from post appointment and flight fatigue & anxiety, and having a difficult time getting up and going today, the weather outside is great, the sun is shining, and I am alive and with little pain (which Oxycontin takes care of).....so today, Wednesday September 10, 2008 is a good day!

Post Note 3/10- this was a post in a day in the life on a clinical trial participant.....write me if you want additional information relative to process, what happens when you come off the study (have a back up plan ready!) and other info. I would be glad to give you my perspective.

Study- OncologyActivity of Sunitinib in Patients With Advanced Neuroendocrine Tumors- article from OncologyStat.com

2010-03-01T23:59:00.001-05:00

This is an article from US Md's regarding the activity of Sunitinib, a VEGF inhibitor, currently FDA approved but for kidney cancer, on its activity on NET''s.
The article states, "Sunitinib appears to be more active against pancreatic neuroendocrine tumors than carcinoid tumors." And addresses the activity of Suntinib on Advanced neuroendocrine Carcinoma tumors on the body.

http://www.oncologystat.com/journals/journal_scans/Activity_of_Sunitinib_in_Patients_With_Advanced_Neuroendocrine_Tumors.html

If you can not sign on above with the link, you will have to register, ITS FREE and easy or write me for the article.

Info on this drug is on LIVESTRONG.CO below: (this is a great site.....copy it to your favorites...also, it demontrates what one person can do to change the "playing field' in cancer. This was started by the race biker who authored "Its not about the Bike"-- Armstrong.....):

(SAY NO TO IPODS...!"we're here, we're NOIDS, and we won't give up"!
PLEASE HELP THOSE THAT BUY YOUR ELECTRONIC EQUIPMENT, STEVE!

http://www.livestrong.com/drug/342-sunitinib/

The study on the drug appears to have been completed in 2008, MJ Clin Oncol. 2008 Jul 10;26(20):3403-3410
Please note, the opening statement of the study. It notes the lack of systemic options for NET tumors in advanced disease.
However, as readers of this blog have come to understand, there is more than what is listed on this study.

HOWEVER, THE MOST IMPORTANT THERAPY NOT INCLUDED IN THIS PARAGRAPH IS-- PRRT (Y90, LU177 AND IN 111). THIS THERAPY IS THE MOST ACTIVE AND TARGETED THERAPY FOR NET TUMORS AND HAS THE BEST SAFETY PROFILE, AND IT'S PRIMARY TARGETS ACTIVITY IN NET'S/CARCINOID. ITS A THERAPY THAT TARGETS THE "SOFT UNDERBELLY" OF THE DISEASE AND KILLS IS...ITS AMAZING AND EFFECTIVE. TOO EFFECTIVE!
I AM CONFUSED AS TO WHY THIS IS TYPICALLY NOT EVEN MENTIONED IN PASSING IN THESE STUDIES? THIS IS NOT THE ONLY ONE I HAVE NOTED THIS OMMISSION.
WHAT CAN YOU DO? IF YOU READ AN ARTICLE, IF YOU SEE A WRITE UP, AND SEE THIS, WRITE THE AUTHOR AND CORRECT THEM AND SEND THEM STUDIES AND MY PICS! THERE IS AN EFFECTIVE THERAPY, ITS JUST NOT GIVEN IN NORTH AMERICA

(BTW, I THINK CROSBY, THE HOC,KEY PLAYER, IS A GREAT KID, BUT, SOMEONE SHOULD HAVE TRIPPED HIM WHILE HE DID THE "CYCLE" ON THE BOARDS IN OT LAST SUNDAY! WHAT A GAME!!!!)

HERE IS THE SECTION FROM THE SUNITINIB STUDY BELOW:

Surgery is usually curative for patients with early-stage carcinoid or pancreatic neuroendocrine cancer.

"This is often not an option for patients with advanced disease, for whom limited treatment options exist. Somatostatin analogs can alleviate symptoms of hormone secretion, but they rarely lead to tumor regression. Up to 10% of patients respond to interferon alfa treatment; therapy may be limited, however, by fatigue, myelosuppression, and depression. Prolonged use of streptozocin- or temozolomide-based chemotherapy results in objective responses in about one-third of patients, but it is toxic and less effective for carcinoid tumors."

WHY NO MENTION PRRT?

THE AVERAGE DURATION FOR PRRT- LU177 IS 40 MONTHS. IN BAD BERKA, USING COMBINED THERAPIES (Y90 AND LU177) IS 58 MONTHS FROM START OF THERAPY. HOWEVER, THIS THERAPY OPTION IS NOT APPROVED OR ALLOWED OR GIVEN IN THE USA, EVEN ON AN EXPERIMENTAL BASIS (EXCEPT FOR IND111, OR IN CLINCIAL TRIALS IN CERTAIN HOSPTIALS). WHY???

VEGF OPTION

THE SUNITINIB ACTIVITY IS LISTED BELOW, IN MONTHS. THE GOOD PART IS THAT IT'S A ORAL MEDICATION AND DOES WORK FOR A SHORT PERIOD OF TIME ON THE TUMOR:

"The ORR among patients with pancreatic endocrine tumors was 16.7%; 1 patient with a carcinoid tumor had a confirmed response (ORR = 2.4%). In total, 43.9% of patients with carcinoid tumors and 62.1% with pancreatic neuroendocrine tumors achieved at least some tumor regression; most of these patients had stable disease (SD). Overall rates of SD were 82.9% and 68.2% for patients with carcinoid and pancreatic neuroendocrine tumors, respectively.
The median TTPs were 10.2 and 7.7 months, respectively.
Patients’ general health-related quality of life self-assessment, using the EuroQol-5D index, suggested no significant changes during the treatment period.

UTube video of use of Sunitinib for renal cell carcinoma

THIS IS ANOTHER OPTION FOR NET/CARCINOID TUMOR THERAPY, AS YOU LOOK FOR OPTIONS. HOWEVER, PLEASE READ THE POTENIAL ISSUE WITH THIS CLASS OF DRUG, AS VEGF INHIBITORS HAVE BEEN NOTED TO BEING LINKED TO DISTANT TUMOR METS OVER TIME. IT IS ON A LINK TO THE RIGHT.
NOTE- THIS WAS DONE ON MOUSE STUDIES AND THE RISKS MAY OUTWEIGH SUSPECTED CONCERNS. REVIEW ALL THE DOCUMENTS AND WORK WITH YOUR MD AS TO WHETHER THIS THERPAY IS AN OPTION FOR SHORT TERM TREATMENT OF YOUR DISEASE.

HOWEVER, AND I NOTED IN THE COMMENTS AREA OF THE PUBLICATION, TO GO BAC TO PRRT,
WHY NOT MENTION THE MOST EFFECTIVE THERAPY FOR NET/CASRCINOID TUMORS TO DATE, RELATIVE TO TREATMENTS. IF THE OPTION IS TO NOTE US AND CANADIAN THERAPIES- THEN DISCLOSURE WOULD HAVE BEEN APPROPRIATE, IN MY OPINION. IT'S AS IF THIS MOST EFFECTIVE, SAFE AND TARGETED TO NET/CARCINOID, DOES NOT EXIST! THAT IS NOT RIGHT TO THOSE THAT ARE DYING! IF YOU HAVE THE ANSWER AND CAN "LEARN ME RIGHT" PLEASE DO SO! i NEED LEARNING........

HOWEVER FOR NOW, IN THE USA AND CANADA, SUNITINIB IS ANOTHER OPTION-- ONE OF THE VEGF INHIBITORS THAT HELP CONTROL THE GROWTH--
SEE DATA SHEET IS ON THE LINKS ON THE RIGHT SIDE. STUDY, AND ON THE "LIVE STRONG.COM" SITE, EMPOWER YOURSELF.
THIS COULD HELP YOU TO GET TO THE "NEXT THERAPY".

ESSENTIALLY THIS IS WHAT I DID UNTIL I FINALLY GOT TO PRRT. WITH NETS/CARCINOID, YOU LEARN TO "BOUNCE FROM THERAPY TO THERAPY " AND LEVERAGE THEM TO "BUY YOU TIME".......

TIME IS PRECIOUS FOR THOSE OF US WITH TERMINAL ADVANCED NET/CARCINOID CANCER.

BOY GEORGE SANG A SOME CALLED "TIME" IN THE 80'S! REMEMBER THIS ONE?!?!?

http://www.youtube.com/watch?v=8tI1_KlO6xI

GOOD LUCK!

Novartis chief steps aside for Jimenez & Novartis achieves record results in 2009

2010-02-26T17:44:00.002-05:00

The biggest pharmaceutical company in the "neuroendocrine tumor/oncology space" is called
Novartis. It is truly a "market mover" and the one that in the USA especially, is the major company which oncologist do business with, with respect to NET/Carcinoid tumor therapies, conferences, studies, etc.

There was a recent announcement relative to the company and the CEO being replaced by Mr Joe Jimenez.

The company announcement is under this link:

http://www.fiercebiotech.com/press-releases/novartis-achieves-record-results-2009-momentum-recently-launched-products-drives-grow

Some interesting items on the announcement were:

Pharmaceuticals expects to continue the strong volume growth achieved in 2009 on the rapid expansion of recently launched products, implementing new commercial models to adapt to local market needs while expanding in high-growth markets. However, pricing conditions are uncertain given industry challenges that include healthcare reforms (particularly in the US and Turkey) and biennial price cuts in Japan, while therapeutic-class generic competition is also set to start for Diovan in 2010 ahead of the end of exclusivity in Europe (2011) and the US (September 2012).

Oncology (USD 9.0 billion, +14% lc) remained the largest franchise and ranks No. 2 in the global oncology segment, led by sustained growth of Gleevec/Glivec (USD 3.9 billion, +12% lc) and three additional products - Zometa, Femara and Sandostatin - that each achieved more than USD 1 billion of sales

Sandostatin (USD 1.2 billion, +7% lc), for patients with acromegaly and symptoms associated with neuroendocrine tumors of the gastrointestinal tract and pancreas, has grown from increasing use of Sandostatin LAR, the once-monthly version that accounts for nearly 90% of net sales. Recent clinical trial data demonstrated a significant delay in tumor progression in patients with metastatic neuroendocrine tumors of the midgut treated with Sandostatin LAR. These data formed the basis of a recent US National Comprehensive Cancer Network (NCCN) update on treatment guidelines for neuroendocrine tumors. (this is the result of the PROMOD STUDY REPORT).

FYI- one LAR30 injection in the USA costs from $7,000-16,000 USD w/o insurance deductions.

Afinitor (USD 70 million), an oral inhibitor of the mTOR pathway, was launched in the US, Europe and Switzerland after gaining regulatory approvals in 2009 as a treatment for advanced renal cell carcinoma (RCC, kidney cancer) following VEGF-targeted therapy. Afinitor is being studied in many cancer types. Phase III studies are underway in patients with neuroendocrine tumors (NET), breast cancer, lymphoma, tuberous sclerosis complex (TSC) and gastric cancer. Two potential regulatory submissions are planned for 2010 based on the outcome of clinical trials of this medicine in patients with neuroendocrine tumors (NET) as well as tuberous sclerosis complex (TSC). A late-stage trial is planned to start in patients with hepatocellular carcinoma (HCC) in early 2010. The active ingredient, everolimus, is the same as in the transplant therapy Certican.

FYI- I undertook this study via RAD001 in MDACC from 2005-2007. I initially had partial regression and stability however, when I completed the the initial study my tumors had grown to the point one was inoperable. I also purchased CERTICAN 5mg, in Costa Rica, under the direction of a Carcinoid MD who recommended I stay on the drug after the trial. I took it for 6 months and the tumors became very aggressive. I stopped and was offered ATRIPRIMOD, which I declined and started on PAZOPANIB, a VEGF inhibitor in MDACC in Sept 2007.

Certican (USD 118 million, +31% lc), a transplantation medicine, generated solid growth based on its availability in more than 70 countries. In the US, the FDA issued a Complete Response letter in December 2009 for this medicine (under the brand name Zortress) for prevention of organ rejection in adult kidney transplant patients. The FDA discussions focus on product labeling and Risk Evaluation Mitigation Strategy (REMS) as well as a safety update, but no request for more clinical studies. This medicine, which has the same active ingredient as Afinitor (everolimus), has been shown to have good immunosuppressive efficacy and a manageable side-effect profile
FYI- I purchased this drug for 6 months when I was taken off the trial, under the care of a NET MD.

R&D UPDATE

Novartis has one of the industry's most competitive pipelines with 145 projects in pharmaceutical clinical development, of which 60 involve new molecular entities.

FYI- there is NO MENTION of PRRT study or investments n this report. Later, I will read the detailed annual report to see if it mentions royalties from the companies the US technology for PRRT, owned by Novartis, and out licensed to two small pharmaceutical companies, mention anything relative to status or approvals. I will report it on this blog!

Natural Cancer Defense- Vitamin D? What ever happened to consuming Black Raspberries for carcinoid control?

2010-02-23T13:00:00.005-05:00

There is an article on published by ABC news detailing the effects which vitamin D has on Breast Cancer Cells (they have shown similar results on Prostrate and Colon Cancer) and how Vita D may help in stopping the growth, and causing cancer cell death!

The article link is

http://abcnews.go.com/GMA/OnCall/study-vitamin-kills-cancer-cells/story?id=9904415

If you go to the article, there is also a video on this study also embedded in the article......!

Of course they state that more studies are needed but one way to make sure you have enough Vitamin D is for people to ensure they are getting enough SUNLITE!

Note- when I was first diagnosed, I lived in Costa Rica and could not find the primary though I had it for 18 months, it just never grew, in the right kidney. No tumors grew, anywhere......
I was outdoors every weekend in a hockey park or at the beach for hours. I was tanned all the time...no tumors. I moved to Canada, under a lot of stress due to the move--everything went wrong-- in Aug 2003.

In Oct 2003 I went in for my every 4 months test (I had been doing it scans (Oct w Ct scans w Dr Kvols) April 2002 @ Moffitt (flying from Costa Rica at my cost btw then Canada!) with nothing AT ALL found, except the kidney lesion (1.7cm) which never grew and nothing was done, so it was "watch and wait".

Well, Oct 2003 all of a sudden revealed a doubling of the kidney lesion and a mets in the liver!
My journey through hell had really started...the only difference between that and prior (no growth)...
NO SUNLITE
STRESS- major
CANADA WATER AND AIR, no Costa Rica water or exercise (used to work out in gym work days during lunch)
WATCHING CURLING ON TV FOR MANY HOURS (I think the CBC showed it 12 hours a day)

There may be a point to this...so today, I am going to the sun tan booth and start on tanning, mildly, to compensate for the horrific winter weather. Also, you should consider Vitamin D daily, but I was taking those in Canada and Costa Rica...the differences are noted above!

https://www.cincinnatitan.com/page.php?page=5

Was it the sunlight that helped? Dunno, but I need some skin color, so today its on the schedule!

Fake Costa Rica here I come! PURA VIDA brotha..

Black-raspberries
Finally, there used to be a lot of noise relative to the merits of eating black raspberries, in large quantities, daily for cancer control and reduction (I have written about it in this blog and the amounts needed- search on the blog goggle search to find some of them).
I have not read or seen anything on this for a while. Is it still valid? If anyone has information please forward to me in my email.

PRRT RESULTS- WHAT IT CAN DO TO YOUR TUMORS & CONTACT INFO!

2010-02-20T18:48:00.006-05:00

PLEASE GO TO THE FOLLOWING POST TO SEE MY CURRENT RESULTS AFTER 2 ROUNDS OF PRRT LU177 THERAPY AT BAD BERKA CLINIC IN GERMANY WITH PROFESSOR DR RICHARD BAUM.

BELOW IS THE LINK (IT IS THE 3rd ENTRY BELOW):

http://www.renalcarcinoid.com/2010/01/m-y-prrt-results-via-scan-presentation.html

NOTE: these results are probably out of norm (though it is a partial remission), and yours could differ, however, it does show how effective this therapy can be to save your life, while maintaining a good quality of life, and giving one hope again!

If interested in this therapy, work with your MD for a referral, or if they are unaware of this treatment option for your NET tumors, Dr Baum's NEW email address is :

richard.baum@zentralklinik.de.

Note: please be clear on what you are requesting and writing Dr Baum, as he receives many emails a day and is treating patients! You can also work with your Carcinoid MD for a referral (Dr Shah, Dr Botha, Dr Warner and many other carcinoid MD's work with Dr Baum, and they can begin the first contact. However, he also responds directly to well written email requests!!

You can write me for information smm2367@gmail.com and I would be glad to respond to any questions you have:
> separately, please SUPPORT AND CLICK THE SPONSOR, AND ADS ON THIS BLOG PLEASE- HIT THE LINKS! ALL REVENUE RAISED IS CONTRIBUTED TO CANCER FOUNDATIONS!!

"Why is PRRT not available in the USA"?

ARTICLE BY CANCERWORLD.COM- FIGHTING A SMARTER WAR ON CANCER!

2010-02-18T13:46:00.002-05:00

BELOW IS A LINK TO http://www.cancernetwork.com/ WHICH IS AN EXCELLANT ONLINE RESOURCE FOR CANCER INFORMATION. I WOULD URGE YOU TO ENROLL AND RECEIVE THE LATEST ARTICLES TO YOUR EMAIL IF REQUESTED.

THE ARTICLE BELOW IS OF INTEREST WITH TODAY;S DEBATE ON HEALTH CARE AND REFORM AND THE COST OF CANCER.....I ALSO MADE A COMMENT REGARDING
"INSURANCE WILL PAY FOR EXPENSIVE CANCER CARE".......NOT!

IN ANY EVENT, ITS A GREAT ARTICLE AND ONE WHICH SHOULD LEAD US TO THINK ABOUT HOW TO MANAGE THIS MONSTER IN A WAY THAT MAKES SENSE AND DELIVERS THE "COST BENEFIT EQUATION".

AS A FOOTNOTE, THE ARTICLE FORGETS TO MENTION THAT ONE WAY TO MANAGE YORU HEALTH CARE OPTIONS AND COST, IS TO LOOK GLOBALLY! USA MD'S SHOULD DO THIS MORE.

I AM CURRENTLY UNDERGOING PRRT THERAPY IN GERMANY, PAID OUT OF POCKET FOR THE MOMENT OF COURSE. PRIOR TO THAT, I USED TO PURCHASE RAD001 (CERTICAN 5MG) FROM COSTA RICA WHEN I WAS TAKEN OFF THE STUDY AND ANOTHER MD RECOMMENDED I CONTINUE TAKING IT.....I SEARCHED GLOBALLY.

I FOUND IT IN COSTA RICA AND PURCHASED IT, OUT OF POCKEY OF COURSE, BUT I WAS ABLE TO PURCHASE IT AT LESS COST THAN IT WOULD HERE, AND STAY ON THE DRUG WHILE SUPERVISED BY A CARCINOID MD!......IN RESPTROSPECT, A WRONG "COST VALUE" MOVE AS IT ONLY HELPED ME FOR 6 MONTHS AS A TREMEMDOUS COST, BUT IT DID TEACH ME A LESSON.....

THERE ARE TREATMENTS OUT THERE, OUT OF THE USA, THAT ONE NEEDS TO INVESTIGATE AS YOU RUN OUT OF OPTIONS IN THE USA (IN MY CASE, I SHOULD HAVE BEGUN PRRT MUCH EARLIER IN MY DISEASE COURSE THAN AT LATE END STAGE AS I DID).

HOWEVER, MY RESULTS HAVE BEEN "AMAZING" AND I AM STILL ALIVE TODAY AT A COST YOU COULD ONLY DREAM OF IN THE USA!

CANCER COMPASS LINK AND ARTICLE (IN CASE YOU NEED TO ENROLL TO GET IN:
http://www.cancernetwork.com/display/article/10165/1522631

Fighting a Smarter War on Cancer

By John L. Marshall, MD

Professor of Medicine and Oncology

Chief, Division of Hematology/Oncology

Director, Otto J. Ruesch Center for the Cure of GI Cancers

Lombardi Comprehensive Cancer Center

Georgetown University

Washington, DC

February 11, 2010

Adapted, with permission, from The Washington Post, November 29, 2009.

Financial Disclosure: The author has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.

In my practice as an oncologist specializing in gastrointestinal tract cancers, a recent week was fairly typical. I saw 50 patients, ranging in age from 32 to 87, equally divided between men and women. Though a couple of them have inherited a gene that may have caused their GI cancers, I have no explanation for why most developed their disease. It is as if they were simply struck by lightning.

My patients seek state-of-the-art therapy, access to clinical trials, and new treatments, all of which we provide at our institution. Almost all of them have insurance, and most have some form of prescription drug coverage; their access to care is virtually limitless. We employ the latest diagnostic tests, targeted chemotherapy, minimally invasive surgical techniques, and incredibly precise radiation. Yet, despite the many recent advances in detection and treatment, of the 50 patients, 40 of them are likely to lose the fight.

In the extensive debate over health-care reform, we have heard little discussion about the enormous cost of cancer care. (Some of the only voices to broach the subject are those fearing “death panels.”) But at this moment, when a significant shift in the health system in this country is possible, we must ask some difficult questions: Does it make sense to support cancer care at the current levels in the United States? Who should determine the value of care?

Giant Disconnect

At the moment, there is a giant disconnect between patients, the cost of care, and the clinical benefit of the treatment—a disconnect that has caused us to lose perspective. When it comes to cancer care, we’re not getting what we pay for.

Cancer medicine is often regarded as an area of significant progress and clinical research, so we should be able to tell without much difficulty what kinds of treatment are valuable and what kinds aren’t. But given that 80% of my patients will die of their cancer, it’s clear that we have not found an “optimum” therapy.

In 1971, President Richard Nixon declared war on cancer, with the charge to “cure” the disease. Since then, billions of dollars have been spent on research, yet we have made only minor real progress. The most common approach to treatment involves exposing large populations of patients to highly toxic poisons in the hopes that the treatment will kill the cancer cells and not the patient.

This strategy has succeeded with several types of less-common cancers, curing some patients with leukemia, lymphoma, testicular cancer, and most childhood cancers. But it has not worked for more common forms of the disease, including breast, prostate, lung, colon, pancreas, stomach, and ovarian cancers. These cancers represent an enormous public health problem, consuming the majority of our cancer-specific health-care costs and research dollars.

In many ways, we have quit trying to win the war on these diseases. Few cancer clinical trials are designed to “cure” patients. They are commonly aimed at detecting small differences between the treatments being compared: an extension of average survival from 5 months to 6 months, for example. These trials typically cost millions of dollars (often including taxpayer support), take years to complete, and can involve thousands of patients. It is this kind of care that many Americans are afraid they will lose access to as a result of health-care reform.

Medical Luxury

Globally, cancer care is a medical luxury. With some diseases such as colon cancer, the treatments alone cost more than $15,000 a month, yet on average add only a few months to survival. Most poor countries do not support any cancer care; most developed countries highly restrict it because of its cost and limited effectiveness. The United States is the only place on Earth with relatively unfettered access to cancer care, including the latest medicines, sophisticated scans, and high-tech radiation, all of which are very expensive. But despite their more limited access, cancer patients in other high-income nations may live longer and with a higher quality of life than patients in this country.

If the Obama administration were to call on oncologists to help choose which cancer treatments would be included in a public option plan and which would fail to meet some “value” standard, we would have no guidelines to follow. The Food and Drug Administration uses safety and efficacy as standards for drug approval, but neither of those considers the magnitude of benefit or cost. I frequently ask my students and peers if there is a cancer drug today that they would pay for out of pocket if they had to. We all have patients who lack insurance but have some financial means, making this an exercise that is played out regularly in our clinics.

After a long pause, someone invariably will say “Gleevec” (imatinib), the oral agent used to treat chronic myeloid leukemia. Gleevec costs up to several thousand dollars a month, but it controls this leukemia for a long time with very few side effects—a true magic bullet. Very few cancer drugs can be described as having this kind of value. “Thank God for my insurance” is a common line from patients with this disease.

Practicing Evidence-Based Medicine With Little Evidence

In cancer medicine, fewer than 5% of all patients in the United States enter clinical trials. That means more than 95% are treated with the “standard of care”—a legal term denoting a minimum level of care for an ill or injured person.

How did we end up here? The answer is simple: Cancer patients are scared for their lives and will accept what is offered, and we oncologists want to offer improved outcomes and recommend the best treatments we can. Insurance will pay for these treatments. A portion of fees collected by cancer doctors and hospitals is based on how much chemotherapy we administer. So the more drugs we give, the more radiation we give, the more we collect from health insurance. The incentive system makes it less lucrative to talk to patients—to counsel them, to help with their decision-making—than to treat them, regardless of the value of the treatment.

A major focus of health-care reform is for doctors to practice evidence-based medicine: to offer therapies that have been proven to help patients live longer or, at least, live better. The problem in cancer medicine is that we have very little evidence to support what we are doing. Because so few of our patients enter clinical trials, we have no way of tracking their outcomes collectively, and we learn almost nothing from them. Our understanding of cancer therapies comes from the 5% of patients who enroll in trials, a tiny database when we consider the highly variable nature of the disease. In fact, most of our evidence has not come from clinical trials performed in the United States but from nations where patients have little access to advanced care except through participation in such trials.

Patient Expectations

In this country, the highest hurdle we must leap is our patients’ expectations. Cancer patients facing death want treatment; they want hope that they will be cured, even if they have been told that they cannot be cured. They will try toxic treatments over and over, hoping to extend their lives. We physicians are co-conspirators. Of course, we also want to believe that the next treatment will help more than the last, even though we know that is rarely the case. What if we had to pay for all this out of our pockets? Would we pay that much for some possible hope?

I believe we can invest more in actual hope. To do so, we must further explore the genetic makeup of patients and their cancers. We can no longer diagnose cancers using only a microscope. We must profile them at a molecular level to determine precise treatments, instead of using our current trial-and-error approach.

To assess a patient’s specific genetic problem, we must understand all the possible permutations and patterns. This will come only from a comprehensive clinical database—a high priority of the administration’s reform plans. For example, we know there are at least four different types of breast cancer; they look exactly the same under a microscope but are very different diseases. The repeated biopsies and blood tests that are needed, none of which is covered by most health insurance plans, will become critical to finding our answers.

Looking Ahead

The future of cancer care will rely on personalized medicine. This requires a significant change to our medical system, which is built around one-size-fits-all treatment and seemingly unrestricted access to care. The system answers our emotional needs and provides some hope for a cure, but moves us forward only a few yards at a time.

Oncologists are optimists, and I am proud to be among them. I truly believe we can cure cancer. I care greatly for my patients and am doing everything in my power to improve and lengthen their lives. When I offer a clinical trial to a patient, I am hopeful that it will be better than the standard treatment. I am optimistic that health-care reform will not simply provide everyone with insurance that will cover the “standard of care” but will also force us to determine the true value of treatments.

There is nothing that focuses the mind more than a cancer diagnosis. I can assure you that all of my patients have very clear vision and have shifted their priorities. We as a country must do the same on their behalf. Health-care reform—and a better understanding of what we’re paying for when we treat these terrible diseases—will help focus our approach to caring for cancer patients and finding a cure.

—John L. Marshall, MD

Search Media- Study/Results -1) Role of Octreotide imaging in detecting NET tumors in 2010 . Do we still need it? 2)Somatostatin receptor-based imaging and therapy of gastroenteropancreatic neuroendocrine tumors. If you can not see the articles, you will need to sign up for this service. (the article topic is linked to Media Search)

2010-02-16T13:55:00.002-05:00

Below are two articles relative to NET tumors, and the use of Oscan, Imaging and PRRT. This datacomes from the web site called Search Media which I have a link below. One can sign up to the site and you receive articles when they are published.

The following two articles are of interest in the discussion of the use of IMAGING for NET tumors and the use of PRRT (GO BABY GO!) as a possible - second line (after surgery- removal of the primary tumor is a must!), NET/Carcinoid tumor therapy- and results.

Interesting data and and articles.....stay empowered and aware! Its your disease and you body and "NO ONE HAS AN ANSWER to this disease" (per one of the many MD's I have visited!)

SEARCH MEDIA Web Link

http://www.searchmedica.com/search.html?q=octreotide%20imaging%20NETS%202010&c=on&ss=defLink&fr=true

1) Article/Study Link- The role of octreotide imaging in detecting neuroendocrine tumors (NETs) in 2010: Do we still need it?

http://www.searchmedica.com/resource.html?rurl=http%3A%2F%2Fwww.asco.org%2FASCOv2%2FMeetings%2FAbstracts%3F%26vmview%3Dabst_detail_view%26confID%3D72%26abstractID%3D1518&q=octreotide+imaging+NETS+2010&c=on&ss=defLink&p=Convera&fr=true&ds=0&srid=1

2) Article/Study Link- Somatostatin receptor-based imaging and therapy of gastroenteropancreatic neuroendocrine tumors - Excellant article on use of PRRT! Must read and bring to MD if needed!

http://erc.endocrinology-journals.org/cgi/content/full/17/1/R53

US Budget Deficit- where does the US spend it's money and problems ahead- GOLD & SILVER FOLKS......and COSTA RICA!

2010-02-14T13:45:00.001-05:00

Random thought of day- US budget deficit:

THIS IS A LINK WHICH DETAILS THE DEFICIT ISSUE IN THIS COUNTRY AND THE INABILITY TO DO ANYTHING, THAT IS DIFFICULT OR REQUIRES CHANGE, PAIN OR ISSUES TO THE POPULATION (AS MOST THIRD WORLD COUNTRIES HAVE TO RECEIVE ADDITIONAL FUNDS FROM THE WORLD BANK OR IMF). IT OUTLINES THE SPENDING BY AREA, IN EASY TO READ FORMAT.

THIS IS WHY YOU NEED TO OPEN AN ACCOUNT SOMEWHERE OUTSIDE THE COUNTRY, AND OR PURCHASE SILVER OR GOLD PIECES- FROM THE USA- SO YOU CAN BUY BREAD AND MILK IN WALMART IN THE YEAR 2040!!!!

www.kowaldesign.com/budget/

Finally, below is another link to a wonderful place in Costa Rica you should consider if you decide to buy a second (or first home)....! Parque Valle del Sol!

You might ask, "what about health care"? Well,. today I pay it myself and I go to GERMANY for cancer treatment.....BTW, you can get a blood test and CT scan done in Costa Rica as you could anywhere! So, something to consider, unless our Government gets off its behind and starts changing........!

http://www.vallesol.com/

James Mannett- A patients tale of dealing through INSURANCE HELL with his cancer. A great article and link with further information

2010-01-30T11:57:00.002-05:00

This article is from MSN and I believe from the symptoms, this individual has CARCINOID............what do you think? Lives in a travel van!

Here is the link
http://articles.moneycentral.msn.com/Insurance/InsureYourHealth/battling-the-system-a-patients-tale.aspx?page=1

Here is the story.....pay attencion to the cancer symptoms......CARCINOID, MID GUT, I THINK!?

Battling the system: A patient's tale

A cancer patient has saved thousands of dollars by tracking his bills, pleading his case and working the phones, demonstrating how to be a smart medical consumer.

[Related content: insurance, health insurance, health care, insurance companies, bills]

By The Wall Street Journal

James Mannett rarely thought about medical bills or insurance during 41 years of near-perfect health. Then he got cancer and became an expert.
Mannett was a fitness buff during his decades as a sales executive for General Electric and other companies. He owned a four-bedroom home in Southern California's tony Laguna Niguel, three cars and a Cessna plane that he flew for fun. After moving to Phoenix, he quit GE in early 2004 and used his savings to get into real-estate investment.

The next year, he was diagnosed with a rare, aggressive form of cancer that affected his small intestine and liver. Mannett, now 45, has so far had six surgeries and dozens of pricey lab tests and imaging scans. He's been to three hospitals and seen experts at several more. He estimates that his treatment so far has cost around $600,000, including travel and other expenses, with about $100,000 of that coming from his own pocket. Mannett, who now lives in a recreational vehicle and is supported mainly by federal disability benefits, continues to receive periodic chemotherapy to contain the cancer in his liver.

.The ordeal has given Mannett an education on navigating the financial straits of being treated for a major disease. It's an experience that can provide lessons for all of us about how to defend our own interests, even when we're at our most vulnerable. The bottom line: Smart medical consumers can save money if they track their bills as closely as they monitor their health.

For instance:
•When his insurer disputed some doctors' bills, Mannett got both parties together on a conference call to work out a compromise.

Fighting a claim denial

•By getting acquainted with a caseworker at his insurance company, he learned how to negotiate lower fees from surgeons before an operation took place.

•And by becoming friendly with financial clerks at doctors' offices, he has been able to secure discounts on some services.

Mannett has cajoled and pleaded his way to more-affordable treatment.

"Unless you go through something like this, you don't understand this stuff," says Mannett, whose computer contains dozens of his appeal and complaint letters about health care charges and coverage decisions. Before, "I just assumed that when you have insurance and you have a bill, they pay it," he says.
What he didn't notice about his insurance

After becoming self-employed in 2004, Mannett decided he needed health insurance. He chose a policy from Assurant that an agent said would cover all his expenses after he met an annual deductible of $4,950. Mannett, who had never bought his own insurance before, says he didn't notice that the plan included an additional $500 annual deductible for seeing doctors out of the insurer's network, or that its payments for such doctors would add up to only 80% of what Assurant deemed customary charges, not the actual billed amount.
In September 2005, Mannett felt a sharp pain in his abdomen. At the emergency room of St. Joseph's Hospital and Medical Center in Phoenix, a scan revealed a 5-centimeter tumor on his small intestine, and three tennis-ball-size tumors in his liver. The doctor told him he likely had only two years to live.

James Mannett has cajoled and pleaded his way to more-affordable treatment.

"It was very surreal. I couldn't believe I was hearing what I was hearing," says Mannett.

Doctors removed the tumor on his small intestine and a third of his colon. He went home a week later, accompanied by his mother and a cousin, a nurse, who had come to care for him.
Insurance company demands proof

As Mannett recovered, the bills stacked up. Assurant wasn't making any payments, he says. Instead, the insurer demanded from him the names and addresses of every doctor he'd seen for the previous five years, so it could verify that he hadn't concealed his cancer when he bought the policy. The investigation dragged on for months until, according to Mannett, he called the insurer and warned that the next contact would be from his lawyer. Soon after, he says, Assurant paid the hospital more than $29,000, as well as several other bills.

Assurant said it couldn't comment on Mannett's case due to privacy concerns.

Still, Mannett spent more out of pocket than he expected. Beyond his deductible, he owed several hundred dollars to some doctors who charged more than his insurer paid. He hadn't realized that even though the hospital was in his insurer's medical-provider network, some physicians working there were not.
In a statement, St. Joseph's said, "We have been working hard to provide additional information to patients to try and make our charges (and how people pay for them) more understandable."

A move that saved thousands

Mannett spent the next few months seeking doctors' opinions about how to treat the cancer in his liver. During this time, he also became familiar with the intricacies of the medical billing system:
Before writing any checks, he double-checked calculations on his insurer's explanations of benefits.

He also learned that, before Assurant would pay for expensive medication to control his digestive problems and other symptoms, he needed to obtain letters from his doctors explaining the need for the drug and pre-authorization from the insurer.
He says he found a helpful caseworker at Assurant, whom he began consulting about coverage.

In early 2006, Mannett settled on a dramatic surgical procedure at Cedars-Sinai Medical Center in Los Angeles. The surgeon would remove half of his diseased liver, hoping the organ would regenerate itself.

On the advice of the insurance caseworker, Mannett got the offices of the Cedars oncologist and surgeon, who weren't in the insurer's network, to agree in advance to accept Assurant's usual rate as their full payment. He believes the move saved him thousands of dollars.
More from MSN Money and The Wall Street Journal

.Surprise charges roll in

But when Mannett awoke in the recovery room, he learned his liver had proved too damaged for the surgery. The incision then became infected and had to be reopened and cleaned. He went home a week later, and a nurse came regularly to dress the open wound.

Then the bills started arriving. Mannett says he was surprised to learn that his agreements with the oncologist's and surgeon's offices didn't include the cost of imaging scans and lab exams.

When his head cleared between doses of painkillers, he convened three-way conference calls among those doctors' billers and his insurer to hash out some disputed fees. He also got a few charges reduced by appealing to a friendly staffer in one of the billing offices. And he wrote letters asking for other charges to be waived because of "severe financial hardship." Mannett estimates his efforts saved him more than $10,000 on the cost of the scans and lab exams.

Cedars-Sinai said it couldn't comment about Mannett because of privacy laws. Generally, the hospital has a variety of programs to help patients in financial need, it said.
A risky procedure, a personal plea
Once his surgical wound healed, Mannett decided on a risky procedure that would pump chemotherapy drugs directly into his liver. The goal was to blast the cancer, but it risked destroying Mannett's liver or causing a heart attack from the shock. Aubrey Palestrant, an interventional radiologist in Phoenix, agreed to do the surgery, which would have to be performed more than once.

Desperate to get a treatment that he figured was his last chance to survive, Mannett chose to not raise the billing issues in advance with Palestrant, who wasn't in Assurant's network. After two rounds of treatment in 2006, Mannett was told that all of his visible tumors appeared dead or dying, though the cancer was likely to reappear. Since then, he has had two more chemo treatments, for a total of four.
Fighting a claim denial
Later in 2006, he got a bill from the radiologist's office that said he owed nearly $8,200 after insurance payments of about $1,100. Additional bills followed. A financial-hardship letter to the doctor's office didn't win a discount.
Mannett says he then called Palestrant personally to plead his case and the doctor agreed to accept the insurer's rate as his full payment, forgiving Mannett's portion. Relieved and grateful, Mannett says he choked back tears.
Palestrant didn't return calls seeking comment.
This article was reported by Anna Wilde Matthews for The Wall Street Journal.

Published Jan. 11, 2010

MY PRRT RESULTS & KIDNEY FUNCTION RESULTS FROM JAN 2010 SCANS AT BAD BERKA- 2 RDS OF LU177 TO DATE (MAY 25, SEPT 18)

2010-01-28T11:23:00.040-05:00

The black areas to the right is the spleen and kidney- NORMAL UPTAKE

I have done 2 - TWO-PRRT LU177 THERAPY to date.

I underwent a res staging scan on January 2010 to define whether I would need additional therapy, by Dr Richard Baum, MD, richard.baum@zentralklinik.de ,which I have the pleasure of working with for my disease since I write him in Feb 2009.

He has decided to wait on further treatments on me due to the results so far of the Lu177. Although I continue to have lesions- liver and belly, they are much less and a lot, 80-90% have been destroyed! In addition, LU-177 may continue to work long after the therapy (6-12 months after sometimes) (see study a few postings below from Cancerworld.Net).

The plan is to "wait and see" what happens in my next set of scans-- will I continue to have activity with the LU177, will the tumors remain stable or will I have problems and growth? Life with cancer is never black and white, its always grey.

But that said, my next scheduled visit and re-staging is set for Oct 2010 (that is 9 months from Jan 2010!!)! This means, aside from blood tests and visits to my local Oncologist, and Nephrologist, I WILL NOT NEED ADDITIONAL TREATMENTS, INJECTIONS, SCANS, MRI'S, ETC.....for over 6 months---God and PRRT willing!
THIS IS THE LONGEST PERIOD OF TIME I WILL HAVE GONE WITHOUT THERAPY, SCANS, ETC SINCE JUNE 2004!!!!!!!!!!

Below is the retro peritoneum- right in the middle belly mets- it is very dangerous as there is a lot of stuff in this area to impair, and was inoperable due to the fact it had wrapped itself around the AORTA VESSEL. I need to determine if today it could be resected?

ABOVE- This is one of the scans I have. I have others if interested which shows the tumor in different angles and one does light up fairly strongly but much smaller.
The interesting fact about this imaging is it also gives a reading on Standardized Uptake Value SUV which should correlate with the viability of the tumor (if you have receptors). Net, although the tumor is 2.6cm, the DOTA uptake SUV is very low. This should mean, although it shows up in the CT scan, some of what is showing up on the imaging may be dead tissue and my body as yet to consume it....there could be little viable tumor left (however, one cell becomes two cells becomes four cells pretty damn fast in this area...!). This imaging, PET Ga68, is one of the most impressive imaging modalities, I have performed to date!
It not only shows the tumor, in color, but also, the most important part, the SUV..

TO THE READERS OF THIS BLOG, AND TO THOSE WHO ARE ATTEMPTING TO FIND THE RIGHT TREATMENT, FOR THEIR NEVER ENDING NIGHTMARE OF A DISEASE, AND/OR HAVE RUN OUT OF OPTIONS, OR WANT TO TRY SOMETHING IN THE "FRONT END' (SEE DR Tom O¹Dorisio COMMENTS ON "HIS TREATMENT SEQUENCE DREAM")--

YOU MUST INVESTIGATE PRRT AS ONE OF THE MUTLI DISCIPLINARY OPTIONS FOR YOUR DISEASE.

THIS TREATMENT/THERAPY SPECIFICALLY TAGETS CARCINOID/NEUROENDOCRINE CARCINOMA CELLS (SANDOSTATIN IS NOT CURRENTLY LABELED FOR TUMOR REGRESSION, ALTHOUGH RECENT STUDIES HAVE INDICATED SOME ACTIVITY (REFERENCE PROMOD STUDY) WHICH DEMONSTRATED STABILITY ON MID GUT TUMORS FOR 11-13 MONTHS.)

LEFT- this is the PRRT IV machine used for the therapy-via IV, simple!

IN THIS COUNTRY, AND IN CANADA (WHY FOLLOW THE FDA CANADA?!?!?), PRRT IS NOT AVAILABLE.
FORTUNATELY, IN EUROPRE, AUSTRALIA, NEW ZEALAND AND OTHER COUNTRIES, THE TREATMENTS ARE AVAILABLE, AND MANY USA PATIENTS ARE NOW GOING FOR LIFE EXTENDING IN EUROPE, AND ALSO ADVANCED IMAGING, WHICH THEY CAN NOT RECEIVE IN THIS COUNTRY.

ANOTHER "HURDLE" FOR A PATIENT IN FINDING THIS TREATMENT IS THAT MOST USA MD'S ARE 1) UNAWARE OF THIS THERAPY, OR 2) SOME ARE NOT AN ADVOCATE OF IT, OR 3) SEE IT AS A "SALVAGE THERAPY".
WITH DRUG REPS HERE IN THE USA TOUTING OTHER OPTIONS, ITS VERY DIFFICULT FOR AN OUT OF COUNTRY THERAPY TO BE ROUNTINELY RECOMMENDED BY MD'S ANYTIME SOON (SOME US MD'S DO HOWEVER).

THE REASON WE DO NOT HAVE THIS OPTION IN THIS COUNTRY IS A MYSTERY AND COMPLEX, BUT, TO BE CLEAR, IT IS NOT DUE TO THE FACT IT IS UNSAFE OR DOES NOT WORK! IT IS MORE COMPLEX THAN THAT, AND ONE WHICH IS AT THE HEART OF OUR MEDICAL AND HEALTH CARE SYSTEM$-- I BELIEVE.

DUE TO THE GIFT OF THE INTERNET, ADVOCATES SUCH AS THE SINGAPORE CNETS, A CARCINOID ORGANIZATION WHO INVITED DR RICHARD BAUM OF BAD BERKA CLINIC AND RECORDED THE PRESENTATION, AND THEN POSTED IT ON THE INTERNET, AND NOW THE CARING FOR CARICINOID FOUNDATION FOR POSTING THE VIDEO ON UTUBE FOR WIDER PLAY--I WAS FORTUNATE ENOUGH TO FIND IT (PLAIN LUCK and help from above!)-- DURING MY MOST DESPARATE TIME.

I STARTED COMMUNICATING WITH DR BAUM IN FEB 2009 DIRECTLY ON MY CASE.

THREE MONTHS LATER I WAS IN GERMANY AND CHANGING MY LIFE!

LEFT- This is a typical hospital room in the ward in Bad Berka, and where you also are given the therapy, in your bed, via an IV.

KIDNEY FUNCTION- IMPROVEMENTS
One of the issues and concerns about this therapy is damage to the kidney's. However, I recently read and posted a report from a hospital in Europe ("Is PRRT Neprho- toxic?) that outlines how to avoid kidney problems and that 2 of the therapies (lu177 and In 111) are not as dangerous to the kidney. The stronger radiation- Y90- if hydrated well and with normal kidney functions, should not see a decline.

As proof- TO DATE- the numbers below are two important kidney functions, and taken from the testing in Bad Berka showing improvement in the kidney after the treatments!
note- I came to BB with moderate kidney disease.

GFR and TER KIDNEY RESULTS

Kidney Function Tests Dates 1/18/2009 9/14/2009 5/18/2009

Tubular Extraction Rate- TER 277 ml/min 202/77% 147/ 54% 97/ 35%

Renal Scinitigraphy Tc 99M MAG3 105% 77% 51%

192 ml/mln (lower limit)

Glomerular Filtration Rate GFR 95 ml/min 56/ 59% 53/ 56% 41/ 43%

Tc-99M DTPA 67 ml/min (lower limit) 83% 79% 62%

TUMORS

Below, are one of the scans done in January which shows 3 scans (i have more if interest) as comparison of my tumor on the PETw/Gallium 68 scan:

Therapy Results- Partial response- liver tumors, lymph nodes, bone mets, and the mid belly mets eliminated or reduced as per scan (*the only issue would be non receptor tumors, however, I have been told I do not have any non receptors to date, via the PETw/FDG testing I had done in Sept).
Also, the large belly mets was feeding off the small intestines via blood vessels, and might have eventually killed off that organ, due to lack of blood supply! It used to be inoperable, not sure now?
The liver was covered-- over 70% with lesions--. It now shows one~large lesion, and 2 very tiny ones, the latter can not been seen very well in the PET Ga68.
These lesions could be removed or ablated, assuming no more PRRT for the time being.
My hope however, is PRRT/Lu177 keeps working and continues to damage the cells DNA and out of existence!

IF YOU HAVE ANY QUESTIONS REGARDING THIS, OR ADDITIONAL INPUT OR SCANS, YOU CAN WRITE ME AT: smm2367@gmail.com

I WOULD ALSO BE GLAD TO TALK BY PHONE, when we write we can trade #'s..

SUMMARY TREATMENTS

> I HAVE UNDERGONE 3 PRIOR SURGERIES, INCLUDING MY RIGHT KIDNEY REMOVAL- (BTW- DO NOT DO THIS IF YOU CAN AVOID IT---GO TO A HOSPITAL THAT KNOWS HOW TO DO "NEPHRON SPARING SURGERY".
I have many posts on this surgery, goggle it in the blog to find MORE ABOUT IT!

>MY INITIAL SURGERY WAS PERFORMED IN COSTA RICA- A LYMPH NODE REMOVAL IN CIMA Hospital in SAN JOSE, COSTA RICA......(BTW- MY OPINION, TRY TO AVOID DIFFICULT SURGERIES IN DEVELOPING COUNTRIES, AND GET 2-3RD OPINIONS PRIOR TO SURGERY.)

> I HAVE UNDERGONE 2 CLINICAL TRIALS-
i) RAD001 5MG DAILY (AFFINITOR W/LAR30) AND
ii) PAZOPANIB 10MG ( W LAR 30).
BOTH OF THESE DRUGS WORKED FOR ME INITALLY AND REDUCED and STABLIZED THE TUMORS FOR A TIME.--RAD MUCH LONGER.
HOWEVER, THE TUMORS CONTINUED TO GROW AFTER A WHILE AND MAY HAVE GROWN MORE AGGRESSIVELY AFTER I WAS TAKEN OFF THE THERAPY.
NET, BOTH WERE GOOD, SHORT TERM OPTIONS (6-12 MONTHS) OPTIONS, IN MY OPINION.

PAZOPANIB HAD SOME VERY STRONG SIDE AFFECTS ON ME, RAD VERY LITTLE.

MY TOTAL TUMOR LOAD, BEFORE AND AFTER I STARTED THE TRIALS, WAS MUCH GREATER AFTER I FINISHED THE TRIALS......much more than when I started!
HOWEVER, WHEN I STARTED THE THERAPIES, MY TUMORS SHRUNK, THE FIRST 3 TO 6 MONTH RANGE, THEN IT WAS STABLE FOR MONTHS. THE TUMORSSTARTED TO REVERSE THEREAFTER HOWEVER.

KEY LEARNING- IF IN A TRIAL, WORK CLOSELY WITH THE MD AND THE NURSE. REQUEST TO SEE THE THE SCANS IN DETAIL. ASK FOR THE TUMOR MEASUREMENTS FOR ALL THE TUMORS AFTER EACH SCAN.
IF YOU CAN GET A DISK COPY OF THE SCAN, THAT WOULD ALSO BE HELPFUL......!

FINALLY, PLEASE SEE THE LINK ON THE BLOG REGARDING VEGF INHIBITORS (ON THE LEFT HAND SIDE). IT EXPLAINS THE DIFFERENT THERAPIES.

>THERE IS ONE VERY DETAILED ARITCLE EXPLAINING THE DRUGS AND ITS ACTIVITIES ON THE BODY,
>THERE ARE 2 ADDITIONAL ARTICLES CONCERNING AN IMPORTANT AND CRITICAL ISSUE WHICH IS BEING STUDIED RELATIVE TO VEGF DRUGS-- POTENTIALLY MAKING TUMORS MORE AGGRESSIVE, AND MAY CAUSE DISTANT METASTASIS.
NOTE- THE ARTICLES POINT OUT THE DATA IS ON MOUSE STUDIES ONLY, AND MORE TESTING IS NEED. HOWEVER; IN MY CASE, THIS MAY HAVE BEEN TRUE, WITH PAZOPANIB AND OR RAD AT THE END OF THE CYCLE- 16 MONTHS AND 12 MONTHS OUT......

ALSO, WITH RAD, MY BELLY METS GREW DURING THE TRIAL TO THE POINT WHEN I CAME OFF THE DRUG IT WAS INOPERABLE, AND I WAS DENIED AN OPERATION BY THE SURGEON. IT BECAME A LIFE THREATENING LESION WHICH CAUSED ME A LOT OF PAIN AND COULD HAVE ENDED MY LIFE (YOU CAN SEE IT ON THE SCANS IN THE BELLY). THIS AREA IS A LIKELY AREA FOR METS SO BE CAREFUL.

VEGF DRUGS, THOUGH NOT LABELED FOR NETS, DO PLAY AN IMPORTANT PART IN HOLDING OFF THE TUMORS, FOR A SHORT PERIOD OF TIME, I BELIEVE AND PER STUDY DATA. HOWEVER, THESE TREATMENTS COME WITH A COST ( EXPENSIVE BTW), AND, IN MY CASE, NOT AS EFFECTIVE AS PRRT- to date, AND STUDY DATA DEMONSTRATE.

BOTH VEGF DRUGS--- RAD AND PAZOPANIB ---HAVE BEEN APPROVED BY THE FDA AND LABELED FOR KIDNEY CANCER, AND ON THE MARKET NOW!

HOWEVER, PRRT, THE MOST EFFECTIVE AND ONE TAGETED ON NET TUMORS, IS UNAVAILABLE IN THE US AND CANADA (EXCEPT FOR IN-111)

CURRENT PRRT STATUS

PRRT IS AVAILABLE IN MOST OF THE WORLD, HOWEVER, IT IS NOT APPROVED AND UNAVAILABLE IN THE USA AND CANADA, (EXCEPT FOR INDIUM-111, A VERY LOW DOSE AGENT , HOWEVER, IT DOES STABLIZE TUMORS IN SOME CASES).

>THE MAJOR RADIOACTIVE AGENTS OF Y90 AND LU177 IN PRRT, ARE NOT AVAILABLE HERE, EXCEPT IN STUDIES.....WHICH BTW, HAVE BEEN USED FOR

A DECADE OR MORE AROUND THE GLOBE.....

>PRRT RESULTS- MUCH, MUCH, MUCH LONGER THAN PAZOPANOIB AND RAD AND OTHER VEGF DRUGS. HOWEVER, THESE AND OTHER VEGF DRUGS HAVE BEEN APPROVED LAST YEAR BY THE FDA - FOR OTHER CANCERS!

EVEN WITH THE CONCERN OF THE LATTER DRUGS MAKING THE TUMORS MORE AGGRESSIVE! EVEN WITH THESE RISKS, THESE VEGF DRUGS ARE APPROVED; HOWEVER, PRRT THERAPY, WITH 10 TO 15 YEARS OF ACTUAL PATIENT TREATMENT AND RESULTS IN EUROPE, WITH EXCELLENT RESULTS, VERY LOW SIDE AFFECTS, IS NOT CURRENTLY APPROVED IN THIS COUNTRY.........!

==========================================================================

Insurance & Cost Data

THE DIFFICULT PART RE: PRRT IS ITS NOT COVERED BY INSURANCE. ----------BUT YOU NEED TO APPEAL IT. HOWEVER, I WOULD RATHER BE TREATED EUROPE, WITH THE EXPERIENCE, AND THE COST BEING 10X (LESS), THAN IF/WHEN IT GETS APPROVED HERE, IF EVER.

WHY WOULD INSURANCE NOT COVER THIS?- (EXCEPT IN SOME APPEAL CASES!)
ITS NOT FDA APPROVED (RAD AND PAZOPANIB ARE).

I AM NOTE SURE, BUT THE ESTIMATED COST NUMBERS BELOW ARE IMPRESSIVE AND COULD BE AN AVENUE FOR APPEAL DATA-- INSURANCE COVERS THE TREATMENT, EVEN AT 70%, IT WOULD BE MANAGABLE AT PRRT PRICES IN EUROPE......!

I HAVE DONE PRICE COMPARISIONS IN THE PAST, HERE IS ANOTHER RECAP:

COST IN USA FOR ADVANCED TUMORS1) USA- AVASTIN, LAR MONTHLY (AVASTIN WEEKLY) AND OS-CANS 7 CT SCANS EVERY 4-6 MONTHS, BL0OD, MD;S THE COST MONTHLY, OUTPATIENT BASIS (WITHOUT INSURANCE DEDUCTS)

THE COST WOULD BE $250,000 TO $300,000, low end $150,000-$200,000 with HMO deductions
RESULTS - TYPICAL - STABLE FOR ONE YEAR, AT BEST, A NUMBER OF HARD SIDE AFFECTS- HBP, FATIGUE PAIN, BLOOD, SOME STUDY CONCERNS ON METS (SEE LINKS ON LEFT)!

2) PRRT IN EUROPE- INCLUDE Y90 OR LU177, PET GA68 AND CT SCANS, KIDNEY SCANS, BLOOD, PRRT THERPAY, 6 DAYS IN HOSPITAL ROOM, DOCTOR FEES AND OTHER HOSPITAL COSTS AND SCANS (HEART AND LIVR ULTRA SOUNDS FOR EXAMPLE)- SAY THREE TREATMENTS AND ADDITIONAL SCANS IN ONE YEAR (LESS THAN MINE (FOR EXAMPLE, I ONLY HAD 2 TREATMENTS AND ONE ADDTIONAL SCAN IN WHAT WILL BE OVER ONE YEAR 17 MONTHS!):

THE PRRT COST ABOVE WOULD BE ~$50,000 FOR THE YEAR- 3 treatments/scans/room/med/MD over 4 months apart!
RESULTS- BEST- (MOST PROBABLY)- PARTIAL OR MINOR TUMOR REMISSION (MINE WAS PARTIAL RESPONSE), or STABLE DISEASE, FROM START OF THERAPY ~DURATION- 40 MONTHS (PER ROTTERDAM STUDY LU177) (RANGE 10 TO 100 MONTHS),
BAD BERKA HAS NOTED IT IS GETTING 58 MONTHS, WITH MIXED THERAPIES (Y90 AND LU177). (RANGE 10 TO 118 MONTHS!)
SIDE AFFECTS- FATIGUE, BLOOD, KIDNEY (THOUGH MINE IMPROVED!), THIS IS PRINICPALLY Y90 RELATED AND INSUFFICIENT PRIOR AND PRRT THERPAY HYDRATION.

---------------------------------------------------------------------------------

SUMMARY

SO TO COMPARE APPLES TO APPLE- ASSUME 3 YEARS OF STABILITY - NOT PROBABLE IN AVASTIN BUT FOR SAKE OF ARGUMENT:

1) AVASTIN/PRRT/SCANS/TESTS/MD, :
TOTAL COST OVER 3 YEARS, RANGE LOW END $350,000 TO HIGH END $750,000 (COST DEPENDS WHERE TREATED- MOST EXPENSIVE- CANCER HOSPITAL)
RESULTS- 3 YEARS OF THERAPY (note- NOT INCLUDED ARE HMO DEDUCTIONS WHICH COULD REDUCE THIS BY %)

2) PRRT THERAPY/3 THERAPIES/ SCANS/ MD/ HOSPTIAL,
40 MONTHS, NO LAR AFTER THERAPY, CONTINUE SCANS EVERY 6 MONTHS-
TOTAL COST OVER 3 YEARS-$70.000 to $85,000 - $50,000 1ST YEAR AND THEN $7500 NEXT 2 YEARS PLUS BLOOD TESTS IN USA OF $7500, TOTAL COST FOR 3 YEARS & TRAVEL LODGING.

OBAMA, CONGRESS DOES NOT WANT TO PASS HEALTH REFORM, PAY FOR OUT OF COUNTRY PRRT TREATMENT.....MAJOR COST SAVINGS!

==========================================================================

THINGS YOU HEAR ON AN AIRPLANE

MY SEAT MATE (X DRUG EXE) ON THE PLANE FLYING BACK FROM GERMANY SHARED A GREAT STORY, AND ONE WHICH MAY EXPLAIN WHY THIS EFFECTIVE AND INEXPENSIVE PRRT TREATMENT IS NOT APPROVED IN THIS COUNTRY?

SHE NOTED THAT DRUG COMPANIES "LEARNED THEIR LESSON" WITH THE POLIO VACCINE DRUG DISCOVERY--- ONE INJECTION OR SUGAR PILL AND THAT WAS IT, NO MORE POLIO FOR LIFE.....! HOWEVER, FOR THE PHARMACY COMPANY, THIS MEANS NO MORE SPENDING $$.....!!!!!

SO GUESS WHAT? CURRENTLY WHAT DO WE HAVE FOR HIV....? WE HAVE A LIFETIME WORTH OF DRUG COCKTAILS, TAKEN DAILY, AT A TREMENDOUS COST, DAY AFTER DAY, WHICH MEANS YOU MAY GET STABILIZED DISEASE, BUT NEVER CURED......ITS THE SAME FOR CANCER DRUGS CURRENTLY !

WHY IS PRRT (LU177 Y90) NOT AVAILABLE IN THIS COUNTRY?

BAD BERKA GERMANY- I AM LEAVING WITHOUT TREATMENT AND WITH ONLY 2 SMALL LESIONS IN MY BODY!

2010-01-20T05:21:00.012-05:00

I am ready to leave Bad Berka clinic on Wednesday, Jan 21, 2010!

I have done 3 days of testing, from the heart, liver, scans, blood, name it I have done it, to determine the status of my cancer. Recall, I walked into Dr Richard Baum's office in May 2009 a very sick and dying man! With advanced neuroendocrine carcinoma cancer, a failing kidney, edema, 100 mg of Oxycontin to control the pain, looking like father death with my previous VEGF drug trial,,,,,,I was in bad shape and not far from dying!

THIS IS WHAT I LOOKED LIKE IN MAY 2009 (and insides) AFTER 1ST THERAPY, W/DR. BAUM right

THIS IS WHAT I LOOK LIKE IN DEC 2010! HANDSOME SOB I AM!

Here are the results from the scans, AFTER 2 PRRT (LU177) TREATMENTS AT BAD BERKA

This is a email note to one of my carcinoid oncologists in Columbus Ohio (I also will send to Dr Nuess who is my Cinci based oncologist) (I WILL POST THE SCANS WHEN I GET HOME FOR ALL TO SEE!)

DURING 2ND THERAPY, SEPT 2009

Dear DR,
attached please find a short summary of the re-staging results of S.M. 4 months after the 2nd PRRT.
He presents with one of the best responses I have ever seen after Lutetium-177 DOTA-TOC.

In addition, the function of his single kidney (GFR and tubular extraction rate, TER) has significantly improved (!).

Blood counts are within normal range.

I therefore decided not to administer another cycle of PRRT but to perform re-staging in October 2010.

Best regards,

EPICRISIS, ASSESSMENT AND PLAN

Re-staging 4 months after the second peptide receptor radionuclide therapy (PRRT) of
the previously progressive, metastasized neuroendocrine carcinoma showed
excellent therapy response with further regression of the metastatic lesions by Ga-68
DOTA-TOC receptor PET/CT (PERCIST criteria). '

There is now only one single receptor positive liver metastasis in segment S4a left which regressed from a maximum SUV of 39.3 to now 26.9. Also the abdominal lymph node lesions regressed (from 41.6 SUV down to 11.2) and the previously seen bone metastases disappeared completely.
There are no new tumor lesions.!

Renal studies show a further significant functional improvement (sic!) of the single left
kidney: Compared to the baseline values before PRRT, GFR improved by 16 % (now
59% (66 ml/min), TER improved by 39% (now 74 % up from 35 %), which is now in the
normal range.

No hematologic toxicity (normal blood counts) after PRRT.

Clinically, the patient is doing fine.

RECOMMENDATIONS

The following controls (over the next months) are necessary:
• Hb, RBC, WBC, PLT: every 2 months
• Kidney function (creatinine, BUN), and electrolytes at bimonthly intervals
• Liver function (GGT, AP, GOT-ASAT, GPT-ALAT, bilirubin) bi-monthly

Next admission (re-staging) is planned for:

October 3, 2010.

"SOOOOO", AS THEY SAY IN GERMANY, I NOW HAVE 2-4 LESIONS, THAT ARE DETECTABLE IN MY BODY- ONE IN THE LIVER THAT IS LARGE, THE OTHER ONE IN THE BELLY 3CM, THAT USED TO BE TOO LARGE 7CM, AND COULD NOT BE OPERATED ON IN THE PAST, BUT NOW A VERY TUMOR....!
THIS TUMOR WAS KILLING ME AS IT WAS FEEDING OFF THE SMALL INTESTINE AND WOULD HAVE KILLED OFF THE ORGAN DUE TO ROBBING BLOOD SUPPLY!

ITS HARD TO IMAGE, A FEW SHORT MONTHS AGO, WITH MY CURRENT SITUATION, AFTER GOING THROUGH SOME OF THE MOST UPDATED AND ADVANCED TREATMENT OPTIONS IN THE USA --3 SURGERIES, 2 CLINICAL TRIALS AND FAILING SLOWLY AND DYING, WHERE I AM TODAY!

THANK GOD FOR THE INTERNET, MY FRIEND BILL CLAXTON FROM THE SINGAPORE CNETS CHAPTER, WHICH INVITED DR BAUM TO SPEAK ON THE THERAPY AND SCANS, AND PUT IT ON THE NET FOR ALL TO SEE. HE THEN GAVE ME HIS EMAIL WHEN I EMAILED HIM UNDER DURESS!

AND FINALLY, THE BAD BERKA CLINIC, PRRT, AND DR RICHARD BAUM AND THEIR WONDERFUL STAFF OF DOCTORS THAT KNOW MORE ABOUT NEUROENDOCRINE TUMORS COLLECTIVELY, THEN ANYWHERE I HAVE BEEN. AND ALL THE MD'S AND STAFF IN THE US THAT SUPPORTED AND HELPED AND TREATED ME DURING THIS TIME!

FINALLY, TO ALL FOR YOUR PRAYERS AND ENCOURAGEMENT I RECEIVED FROM FAMILY, FRIENDS AND MANY "NET AND BLOG" FRIENDS I HAVE MET THROUGH THIS BLOG/INTERNET!

TO NOTE- I STILL HAVE THE TUMORS, I STILL HAVE THE CANCER, AND I READ THE STATS ON THIS THERAPY, BUT TODAY, FEB 16, 2010 I AM ALIVE AND BETTER! WHICH IS A GOOD THING WITH ADVANCED CANCER....

NEXT RETURN DATE- OCT 3, 2010-....I DIDN'T THINK I WOULD LIVE TO SEE ANOTHER OCTOBER BACK IN FEB 2009, MUCH LESS A RESTAGING DATE WITH A TUMOR LOAD LESS THAN IN 2003!

I WONDER IF IT'S "OCTOBERFEST" IN GERMANY AT THAT TIME!?

+***TO FIND OUT MORE ABOUT MY TREATMENT.....GO TO THIS LINK AND SEE BOTH PARTS (PART 1 AND 2) OF THE VIDEO WHICH CHANGED MY LIFE!****
http://www.youtube.com/user/renalcarcinoidguy

*BTW, EVER WONDER WHY THIS WONDERFUL TREATMENT- PRRT (LU177 and Y90) AND SCANNING (PET W/GA 68) IS NOT AVAILABLE IN THE USA?

I DO?!?!?*

Alive and well.....well ALIVE! and going to Germany this week!

2010-01-14T12:21:00.000-05:00

I will write more later but I am doing well, and headed to Germany this week for scans and tests with Dr Baum and Bad Berka in Germany this Friday and starting on Monday, Jan 18, 2010!
MY PAIN WE THINK WAS A HERNIA, MAYBE CONSTIPATION OR MAYBE DIVIRCULITIS (SIC)...BUT ITS GONE NOW AND I AM BACK....

I WENT TO HOUSTON AND TO COSTA RICA FOR SOME BUSINESS AND WILL POST SOME PICTURES FROM A FRIEND OF CR WHICH YOU HAVE TO SEE....ITS A BEAUTIFUL COUNTRY!

Please keep me in your prayers for NO TUMORS AND TUMOR REDUCTION...FOR THE FIRST TIME I AM WALKING IN AND FEELING LIKE I AM GOING TO GET GREAT NEWS WITH THE PRRT TREATMENT DUE TO THE NUMBERS I GOT LAST TIME.....THEY CAN TELL YOU WHAT UPTAKE I RECEIVED AFTER THE SECOND TREATMENT!

NO NEW TUMORS, AND TUMORS SHRINKING......THAT IS WHAT I NEED AND NO ADDITIONAL PRRT THERAPY UNTIL LATER....THAT IS WHAT MY "DREAM" IS LIKE,....OTHERS DREAM OF RETIREMENT, MONEY, CRUISES, ETC......

I DREAM OF A CLEAN PET GA68 & CAT SCANS AND BLOOD TESTS..........THAT IS MY LIFE!

LIFE CAN BE HELL TO SOME AND I AM IN THE MIDDLE OF IT BUT I HAVE DR BAUM AND BAD BERKA AND A GREAT TEAM OF MD IN TOWN- DR NUESS, ARLEEN, DR SHAH, DARIA AND DR NEACK...THEY HELP ME A LOT HERE ON THIS SIDE AND OVER,......

......AND BTW, I PAY FOR THIS OUT OF POCKET BECAUSE MY FRICKING INSURANCE, HUMANA INSURANCE, WILL DENY IT! WELCOME TO
"KEEP YOU HANDS OFF MY INSURANCE"....

WAKE UP PEOPLE!

Jan 2 2010 IN PAIN!

2010-01-02T13:40:00.000-05:00

PAIN IN STOMACH_ LOWER LEFT HAND SIDE, what does it mean?~

Today is Saturday, January 2, 2010 and I am on my third day of a low grade pain in the left side, bottom, of my stomach! It is the first time I've had a strange pain in my "cancer zone"......since PRRT!

I went to the MD on Dec 31 and she told me they would try anti constipation medicine- DUCOLAX as due to Oxy I am very constipated, which may cause my colon to be distended, and with the scar tissue, may cause the pain. There is some relief when I move the bowels, so I PRAY THIS IS IT!

Option 2, Diverticulitis, which may be due to fact I have been eating nuts, and have had a similar type pain, though more intense, esp when constipated. So for that I got CIPRO and started taking it 2 days ago but still in pain.

If nothing works, by end of day today, I will call MD and get a MRI, which is NOT WHAT I WANT TO DO! I hate hospitals and especially one that does not know me, my rare disease, and all the problems I have had.....when I enter the hospital, and start going through my history, the PC template runs out of room and a siren goes off for the MD INTERNS to come see me and get involved and learn from this "freak of nature"!

I should charge like a side show in the circus! "come see the "renalcarcinoid man" "who is undergoing PRRT in Germany after undergoing 2 clinical trials and after undergoing 3 surgeries!" Come one come all....

I hope this pain goes away..,..pain and cancer go together.....now I am glad I have oxycontin because when I don't take it the pain get more intense. The issue with the pain, it hurt when I breath in, or touch it or walk or push in the toilet, so its not intense on going pain, which is good, but pain and cancer

IS BAD.....!

Merry Christmas! Dec 25, 2009 AND TARP Funded Banks!

2009-12-25T16:23:00.002-05:00

Merry Christmas!!! Dec 25, 2009!
"I am going to Avatar movie now, its 438pm"!

This is going to be like a Tweeter! Which BTW, I have no idea what that is about, other than you have 150 words and famous and people like me say things like "I am going to the bathroom now"! and it gets published on the net...... '

"I am out of bathroom and had a thought, where does the stuff go eventually"?

In any event, I am saying to all Merry Christmas! I hope Santa brought you what you wanted and the TARP (what does this mean anyway?) infested banks did not ring up too much credit on your credit cards! BAC is the worse and I have them for a mortgage...it took them 3 months to find my contract for the house, which when I fell behind, by mistake when I went to Germany, and they sent people to investigate if the house was occupied, they quoted the contract (and it cost me $40 every time someone would come by, park on the street and "investigate"! I think I ended up paying some of the TARP money back from these investigations.....

But they noted the contract at every turn, so when I asked for a copy, THEY COULD NOT FIND THE DAMN THING AND IT TOOK THEM MONTHS....THEY WOULD SEND ME LETTER THAT SAID "WE WILL MAIL IT TO YOU THIS WEEK"...THIS WAS BEGINNING OF NOV...I GOT IT LAST WEEK....!

BANK OF AMERICA!

FORGIVE ME LORD FOR I HAVE SINNED!

Christmas week....my tenth with an invited guest!

2009-12-20T12:57:00.003-05:00

Merry Christmas...!

Last night, I was thinking when I was first told, and when I actually saw the tumor on a scan, that I had CANCER!.
I know all that read this blog have had "that moment", when you were told also, and the story behind it!

I will summarise a short summary, as its a bit different than those from the USA and hopefully you will remember yours.....nice part, we are still alive!

My short story:
My first operation was on Feb 23, 2002, for a "growth near my liver which could be a third kidney or something like that" I was told (my first learning-GET 2 and 3 opinions!)

After the surgery I would ask daily on the status of the lesion, "what was it" and the Md was unable to tell me as the pathologists were "working on it and could not identify it"!

About the 4th day after the surgery, the MD/surgeon, came into my room and started to talk about how I was doing and checking my vitals. I asked him again if he knew of the status of the lymph node, expecting "its benign" but he changed his appearance, very slowly, stood up and told me in Spanish "they were not able to tell me hence the long wait as they had not seen anything like this before, but it is not benign, it is a tumor and its cancerous"!

An immediate rush of blood, a dizzy feeling in my head, and that terrible feeling, the one you get when told you will die! Those that have heard of the words before, "you have cancer!" can attest, it is one of the worst feelings you can endure!

I then asked him questions which he was unable to tell me:

exact nature of the cancer?
primary site?
if I had other tumors (he did not think so)?
or what to do next- I lived in Costa Rica, 2 kids with me underage and had no MD or support system remaining in the USA! ?

Since then, it has been a long journey, one that started that Feb 26 or 27 night, when I was told by the MD that I had CANCER, in San Jose Costa Rica, without a clue in the world as to what to do next, or where to go, or how much time I had left.....?

Unfortunately, their initial pathology report read that my primary was possibly in the Pancreas, and my tumor an adenocarcinoma of the pancreas!.....

I goggled searched that when I got home! Bammmmm, the data hit me right in the head! 6 months to live, average and a very painful death, no treatments!

I also remember when the good Lord sent me a gall bladder attack in Florida, and in the ER took X Rays in the hospital during my vacation in July of 2001. I was released soon after the attack and brought the scans them back to San Jose. But I can still remember a small inflamed lymph node, noted on the scan, near my kidney, which I MD looked at a long time, and decided it was not an issue. Although I did to a endo and colonoescopy with nothing but an ulcer found "which could have caused the pain"...! (this turned out to be the mets that was taken out 7 months later!

It took 7 months and again the guy upstairs said "enough with this crap". this time I was sent me a kidney stone, which after many scans, ultra sounds, mri, but nothing was initially seen other than the kidney stone. However, I continued to have pain and a low grade fever through the week after the stone had passed.
Well, 6 days later, on a Sunday afternoon, I called the MD and asked for another ultra sound, this time of my gall bladder,, thinking it could be something "serious, like a gall stone"....and on that Sunday afternoon, the ulta scan MD scanning and searching, stopped his scan, saying "carajo", and took off looking for my MD to tell him he just spotted a large lesion!

Life as I knew ended...my journey thru hell began in earnest!

Learn more about my treatments, pathology, MD etc, GO TO THE FIRST 4 ENTRIES ON THE BLOG IN AUGUST, 2008. IT OUTLINES IN DETAIL MY DISEASE!

FINALLY, MERRY CHRISTMAS & TO ALL WHO TAKE THE TIME TO READ THIS BLOG, I APPRECIATE IT AND HOPE IT DOES SOME GOOD IN FINDING INFORMATION AND HELPING YOU TO DRIVE AWARENESS AND HOPE IN YOUR LIFE....

ALSO FEEL FREE TO CONTACT ME ANYTIME FOR QUESTIONS, ETC...EMAIL ON BLOG!

FELIZ NAVIDAD! AND A GREAT HEALTHY NEW YEAR!!!

HEALTH REFORM - USA STYLE! Debt Ceiling, Afgan exit plan (listen Obama) and Tiger Woods "Plan of action"!

2009-12-11T13:43:00.012-05:00

HEALTH CARE REFORM- USA PROCESS:

I am watching health care reform news and information on the propsoed reform on TV including the raising of the CONTROLS set in place to manage the debt of this country, which has not controlled anything other than created more paper and congress in front of the TV! It is crazy, really is, and its really life....I would go for a reality show, more stupid and crazy than the one Paris Hilton and Nicky something were on, and call it, "Congress", wait its already on....CSPAN!

I just heard that recently, a Government Actuary projected that health care costs would increase tremendously if the Health Care Reform (operative word- R-E-F-O-R-M!?) bill is passed!

I know that health care reform should decrease costs. IT DOES IN ALL COUNTRIES WHICH UNDERTAKE HEALTH CARE REFORM.
Refer to the Front Line story on this blog ! (see link below to story and to the show!
Also read the summary on the country of Switzerland and why drugs are so inexpensive in the rest of the world.....U-S-A subsidizes lower cost for the world for drugs, due to our higher cost we pay....(why don't we go crazy as they do when Europe airbus subsidizes versus Boeing?!?!)

It's a great feeling to know that I am paying for Sven in the Alps, Sweden and others parts, whist I contemplate bankruptcy.....!

"KEEP YOU HANDS OFF MY HEATH CARE PROGRAM"?!?

Front line report= "sick around the world"!

http://www.pbs.org/wgbh/pages/frontline/sickaroundtheworld/view/

IN THESE COUNTRIES, HEALTH AND MEDICAL EXPENSE HAVE GONE DOWN VIA REFORM, AND CONTROLS....IN THE USA HOWEVER, HEALTH CARE REFORM WILL CREATE ADDITIONAL COST OF $500BILLION MORE (WITH NO PUBLIC OPTION!)?

IN MOST COUNTRIES, THAT WOULD HAVE DONE THIS CORRECTLY (SUBSTANCE VS FORM!), THERE WOULD BE A TASK FORCE, VISITED AND MET W/OTHER COUNTRIES, BRING IN EXPERTS, NON PARTISAN AND NOT INFLUENCED BY THE CURRENT PHARMA, INSURANCE, LEGAL (FORGET LEGAL, THERE IS NO TORT REFORM IN THE BILL!) AND HOSPITALS & MDS (ALTHOUGH THE LATER TWO MAY BE FOR IT!) AND DEVELOPED A COMPREHENSIVE PACKAGE THAT LOWERED COSTS!

SADLY, IT TURNS OUT, THE HEALTH CARE INDUSTRY WROTE THE Fuc#$G! BILL THAT WAS SUPPOSED TO PROTECT ME FROM THE "HEATHERS OF HUMANA"!!

HELL, COULD THEY have NOT done AT LEAST ONE DAMN A ROAD TRIP, TO CANADA, OTTAWA (ALSO, FORGET WHAT YOU HEAR ABOUT "RATIONING AND WAITING IN LINE..." I LIVED THERE FOR 2.5 YEARS. IT IS NOT TRUE AND ITS EXCELLANT)?!? THEY COULD HAVE GOTTEN A COUPLE OF SIX PACKS, SOME TIGER WOODS READING MATERIAL, AND MADE A QUICK "ROAD TRIP" OUT OF IT?!?!? TO LEARN!

WE VISIT COUNTRIES ALL THE TIME IN CONGRESS (NOTE- "CONGRESSIONAL JUNKETS") FOR THIS TYPE OF REASON! HELL, IT IS MANDETORY TO GO TO ISREAL, SUPPORT THEM, AND SEE OUR TAX DOLLARS GOING TO WORK ON A "WALL THAT WILL WORK" DIVIDING THE WEST BANK FROM THE JEWISH SETTLERS!

AS FAR AS I CAN TELL, NONE OF THIS WAS DONE, TO THIS VERY COMPLEX AND IMPORTANT REFORM TO OUR HELATH CARE PROGRAM! NOTHING THAT I CAN TELL.....

MY QUESTION: WHO IN THE HELL; WROTE THE 2000 PAGE REFORM PACKAGE??

(I THINK I SEE ON THE TOP OF THE MEMO PAD: "THANK YOU, FROM THE PHARMACUTICAL AND INSURANCE INDUSTRY FOR MAKING AMERICA STRONG!"

This is incrediable. and shows the world and YOU/US how ineffective this government and the democratic process which is running this country, and has become.....! ITS NOT OBAMA FOLKS, BUSH WAS JUST AS BAD AND THE GUY THAT GAVE TIGER A RUN FOR HIS MONEY JUST AS BAD!

JUST WAIT UNTIL WE HAVE TO DEAL WITH THE SOCIAL SECURITY REFORM THAT IS BADLY NEEDED!

Here is what is more amzing, under Baby Bush, we added a prescription health care plan under medicare, with little debate, review and analysis, It passed in no time without much fanfare! I can not remember one ad on TV (BTW, who is paying for the current, endless pro and con insurance ads anyway?) for the prescription plan?

What is the outcome? Well, you can buy MEDICINE label brands drugs, however, it generated, I believe, close to a TRILLION DOLLARS in additional spending to health care due to the change in the plan. This was done in record time and implemented.....!
"More money, more spending, more revenue on the backs of taxpayers for our senior citizens, that are generally not tax payers. generally (Warren Buffet excluded)"!

As I am writing, I am watching CNN, and all I can see are health care debates with Senate and Congress and others,mixed with ads for and against this nonsense......!

In addition, to add to the insanity, years ago the Federal Government decided to INSTALL A DEBT CEILING! And today we are over 11 trillion in debt, and need more! We installed a CONTROL mechanism in the Reagan years to control the debt, and ensure we would not have "run away spending and preserve the integrity of the Federal Government"! :)

This control now needs to be raised (for the 7th time) due to the fact we have hit the ceiling....and now CONGRESS, which does not DO SHIT! is debating, led by the honorable Congressional Leader and Botox Profit Generator, Pelosi, (to be clear, its not just her I also pick on. Our honorable VP, which I have yet to figure out what he does other than go to Iraq every once in a while. Well, he has as spent more on hair plugs, than say, 1/2 second of Gov spending)!

Net, we are in trouble and as we sit, this madness continues (could this be the violin playing as Rome is burning thing?).

The greatest advantage most people have from all this is they work and shield themselves from this insantity...
I ought to sue the Government for giving me depression due to the way they conduct business......that or can the TV and radio and newsprint and computer....but to be clear, its the news channels that bring the insantity to life....

"DEBATING RASING THE DEBT CEILING"?!?!?....

WHAT THE HELL IS THAT? THE MONEY IS SPENT, IT GOING TO BE SPENT, THERE IS NO OPTION, NO SOLUTION AND WE ARE SPENDING TIME ON "DEBATING THE CEILING"!
THE ONLY REASON IS FOR SOMEONE TO STALL IT AND ADD ANOTHER "SET ASIDE PROJECT", WHICH BTW, MR OBAMA "WAS NEVER GOING TO ALLOW UNDER HIS PRESIDENCY"!

I HAVE THOUGHT ABOUT IT, AND COME TO THE CONCLUSION OUR GOVERNMENT IS EFFECTIVE AT THE FOLLOWING:

1) Building roads, tunnels (turtles included) and infrastructure

2) Policing and prisons and military
3) Foreign Aid, principally Israel and Egypt

4) Lobbing cruise missiles at Arab countries

5) Invading Arab Countries or small Central American countries if we don't like the leader (e.g., Panama, Grenada)
6) Installing our form of government, which does not do shit!, on Arab countries, that we invade, therefor making them worthless.

Those we do and have business or political interests with- Saudi, Jordan and Egypt to name a few- we work (and bow) to the Kings or sham Presidents (which i believe is the way it should work in the middle east...has worked and will forever.....we need to keep our Western European, Calvinist traditions, out of parts of the world where it will not work....! )

BTW, who is running Iraq???

Meanwhile, in Afghanistan, there is a newly elected President, Karzai, who won by

committing fraud, overtly. His brother is noted as the POPPY KING and Gov is ripe with fraud.
All I ever see KARASI do is walk around in his "Waffle House" hat and cap in FOREIGN COUNTRIES, asking for more money for this country and raw meat, to defend him and his brother business interests.
(note- what are odds he has a castle in England somewhere, waiting for him......as General/President Thieu of Vietnam did after the war. Hard working civil servants doing their best!).
Have you ever seen him walk or work WITH THE people, or ride in a tank "Mass Governor style", OR just LEAD his people in that country, which are spending billions upon billions on due to a one eyed Mullah and a CKD cave trotting Arab?

(yes, I can hear you say, OK, RCG, you are so damn smart, what would you do instead?

Well, here is what I would do:
1) get the US troops out of there, leave only a few , gun ho types to try to train some troops!

2) Hire mercenaries from around the world to police the country (Blackwater, Russians, Afrikaners, Pakistanis, etc)

3) Have constantly in the air, 100, missile firing drones,. Anyone step out of line, bam! And add a few cruise missiles and F18's (spread the wealth).....

4) Find a leader, have the Saudis or Paks find him and install him to lead the country. Make him King. Send the voting booths back to Florida!

Send Waffle house guy and his brother to England to break in his house, next to Tiger's new secluded house, called the "Bobcat Villa"!

5) Slow spending down, though, every missile helps the economy!
DONE! OK?

Meanwhile, the real insantity of all, we send more troops (troops = young men and women between the ages of 18-25 to put their life and health on the line while people here debate, grown rich and show no action or leadership!).

I will find old Vietnam Articles on "we need more troops" as history is repeating itself, as clearly as you can say "SURGE".

US DEBT

Enough, I am going to change the channel and watch Gilligan's Island or something....!

Warning, stay away from TV and news...it is not good!

ARTICLE:

WASHINGTON – A new government report is sending a sober economic warning to Democrats trying to push President Barack Obama's health care overhaul plan through the Senate.

The analysis from nonpartisan economic experts at the Health and Human Services Department concludes that the nation's health care tab will grow more rapidly under the Democratic plan senators are debating. It also calls into question the Democrats' plan to squeeze $493 billion in savings from Medicare over 10 years, saying it "may be unrealistic."

In more bad news, the report released Friday warns that a new long-term care insurance plan included in the legislation could "face a significant risk of failure." The silver lining: The bill provides coverage to 93 percent of Americans! (FOOTNOTE: THESE AMERICANS ARE GOING TO ER'S NOW FOR HEALTH CARE...)

NOTE:;What was Thurston Howell III doing, a millionaire, on a small yacht for a "three hour cruise" anyway?!?!?
Seems like he could have purchased a "tiger woods" type yacht and gone himself?!
BTW, Tiger is "packing it up" and heading with wife and children on "repair cruise" on his yacht called

"FAMLY MAN"!

Also, I will bet you he does this next to REPAIR HIMSELF (Letterman just got on TV, cried and made a jack ass of himself)
1) checks into a "sex clinic" for "treatment" for his "disease" (when you are super rich having sex with woman while married is a"disease". When you are not rich, its called "adultery" and you mess up your life and go to hell (unless you are Catholic, then you can go to confession, thank goodness, you still mess up your life)! Note- getting caught or confessing is the issue to mess up life btw!
2) he will blame his Father for emotional abuse and neglect which is "what made him do it"! (hores pr firm to help him vet this thing.
3) Laywers repsenting women that had sex with Tiger have meeting in Superdome in NOLA, and he sets up a "PAY OFF FUND" to pay everyone off.....Gatorade and Nike fund it with stock in company!
3) Aligns and pays his AA associates, and soon Rev.Sharpton will be on CNN defending him and blaming the women in some type of Brawley type conspiracy!
4) Tiger goes on Dave Letterman's show to explain to the world why, Ophra after and then Rev Wright, who quickly blames the same lab that created HIV to infect blacks, was the fault in creating a "bang Tiger epedimic flu" and blames it on the Government, prior to Obama! Gov sets up task force headed, by Attonery General to investigate, headed by ACORN.
5) He will end up getting divorced (unless the pre-nup is so strong, the Swedish "trophy wife" has no option but to stay...Mother in law with heart attack in hospital and all! It the Euros baby!

Question, how did he stay STD free? Bet the wife is being tested for everything as we speak !

FOUR! (or better yet, "THREE-SOME"!)

Note: Please click/support goggle ads on blog....I am almost at $100, which goggle sends me, which I in turn donate! (Tig! A little help here please?!? I am on your side...its a disease!)

BLOG INFORMATION DIRECTIONS: HOW TO GET INFORMATION EASILY & A bit of Humor- "Always check your child's homework before they turn it in to class and the teacher!"

2009-12-08T21:01:00.001-05:00

HOW TO NAVIGATE THE BLOG

Today is when winter is finally coming down (Monday it snowed), and its rainy, cold.

I have a white poodle type dog that should be walking outside and if I take her out she will come back soaked, muddy and take me 1 hour worth of clean up......(suggestion for business, a play center, in doors for dogs! set it up, open one up, draw up some brochures and franchise it all over the place....advertise it the the Enzyte ads one sees at 3am in the morning on TV and it will go....Doggy Play Centers of America! )

I wanted to post 2 things on this blog entry:
1) How to NAVIGATE AND FIND data on a BLOG with 250 entries since August 2008,when I started it up? Also how to find articles and links which I have uploaded onto the site?

2) HUMOR AT BOTTOM (OR ATTEMPT AT IT!)

>when I started this blog, I really did not know what I was doing, or where it was going it, and how to leverage it. As noted in my initial entry, and one year mark, there were some overall goals and objectives in taking the time to develop this and making it public, posting my face and A LOT ON MY MEDICAL information PUBLIC for all to see (typically, I am private person and as this is done for the love of it!, one has to be very careful,

With the amount of Internet fraud and abuse, there is a lot of downside in posting ones pictures, information and heartfelt feeling at times, which can turn out to be an issue). So doing this was way out of my "comfort zone' but, I felt a need to stick my head out the window and as in Network Movie, yell as loud as I could "I am mad as hell and I am not going to take it anymore"!

That said, I begun to journalize my life and JOURNEY thru my NET Cancer Hell which many of the reader of this blog are experiencing, either as caretakers or patients. I started posting and collecting and finding data and before I knew it, I now have a 'boatload' of information on this type of platform, that was not meant for this much data and information. As noted, I would like to covert this into a web site; however, that does take time and effort and at the moment, it number #57 on my list of things to do with what is facing me.

In any event, I have been told my good friends and readers they love the blog; however, it is "hard to find information as there is so much of it on the blog". And they are right, so I have tried to do some things to make it easier to find information or look up data and actually get something out of the blog
.
So here are some helpful directions to guide you through this overdose of data:

1) Want to find an article, study or write up? Use the goggle search box IN THE BLOG, either on the top on the blog or the first search box on the left hand side:

Renal Carcinoid ,COM-Blog Search - Use this to find ENTRIES ON THIS BLOG ONLY!
There is a search box below this. You would enter the 'key word" or phrase and the search will be for the blog only! So if you were to enter "Rotterdam study" and hit enter, this is what you get :

Links to any story I have posted with Rotterdam. You will have to look through these summaries and click the link which may be the data you are looking for (I deleted a number of the search entry results to make this easier:

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Total Cost for entire treatments- $75000 4 treatments, scans $37500 (IF SEPARATE)=$112500 for treatments, which may last up to 40 months (Rotterdam study(on ...

www.renalcarcinoid.com/2009_08_01_archive.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...TO GET ADDITIONAL INFORMATION ON PRRT, PLEASE REFER TO LEFT SIDE, DOWN AND LOOK FOR A SECTION WHERE THERE ARE LINKS ON PRRT - STUDIES, ROTTERDAM WEB SITE, ...

www.renalcarcinoid.com/.../prrt-information-erasmus-medical-clinic.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Nov 13, 2008 ... I have also researched the treatment in Rotterdam, .... >Clinic- MDAnderson- Dr Jame Yao- access to many new drugs in clinical studies. ...

www.renalcarcinoid.com/2008/11/treatment-with-dr-moviglia-t-cell.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Nov 14, 2009 ... EVEN WITH LARGE TUMORS, IT WORKS VERY WELL (SUPPORTED BY ME, BAD BERKA AND ROTTERDAM STUDIES). BY GOD, I DID IT! YOU CAN IT TO! ...

www.renalcarcinoid.com/2009/11/prrt-2nd-round-mini-results-is-prrt.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Aug 16, 2009 ... 1 Nuclear Medicine, Erasmus MC, Rotterdam, Netherlands 2 Nuclear ... 4-cycle phase I dose-escalating PRRT study with Y-TOC in patients (pts) ...

www.renalcarcinoid.com/2009/08/journal-of-nuclear-medicine-prrt.html

You will find the information you need by going this route....its in here, one just has to look for it. (BTW, for those interested in PRRT LU177 RESULTS ON PATIENTS IN ROTTERDAM, CLICK THE LINK ABOVE!) GOOD DATA!

II) IMPORTANT LINKS- I HAVE A TON OF LINKS RELATED TO THIS BLOG TOPIC AND I TIRED TO SEPARATE THE LINKS, MORE OR LESS, INTO THE TOPIC AREAS.
HERE IS WHAT THIS LOOKS LIKE:

Links- Carcinoid Foundations, WEB SITES, Clinical Trials WEB SITES.

>ENETS- Europe Net site- they are more advanced than US in this disease!The primary aim was to integrate basic and clinical research with teaching and to establish guidelines for the diagnosis and therapy of gastroenteropancreatic neuroendocrine tumors (GEP NETs)

>National Coalition for Cancer Survivorship-

>Web site- The Cancer Info Web Site- re: carcinoid, includes financial help, general info and links. A nice start to start your research!

>Canada- Carcinoid-NeuroEndocrine Tumour Society Canada- Maureen Coleman excellent resource and head of organization. Very active.

>Cancer- American Cancer Society

>Carcinoid Cancer Awareness Network- great for online conferences webinaire!

Each link is within the >(arrow) and by clicking, it will take you to the subject. I have the links in various category "blocks", ending with a "Miscellaneous section".
There is a lot of important links in all of these areas including studies, foundations, blogs, etc. You should review this to see what I have gathered in my "data mining" over the past year. Some of it is priceless, I think. This feature is on left side from middle on down.

III) BLOG ARCHIVES. This section is a summary of each posting, date and month. If you find something of interest, you would click the link and it will take you to the post within the BLOG. Here is what it looks like (this feature is on left side at bottom) :
Blog Archive- SEARCH FOR AN ARTICLE AND CLICK.

▼ 2009 (187)

▼ December (3)

Apple CEO Steve Jobs Thanks Donor - 9/9/2009- Vide...

PREVENT CHRONIC KIDNEY DISEASE VIA NEPHRON SPARING...

What do you talk to a cancer patient about?

► November (11)

UTUBE RENAL CARCINOID CHANNEL- BECOME A MEMBER FOR...

Opiate Painkillers May Encourage Spread of Cancer-...

Health care Reform, USA, Sarah Palin, & Musica! Pa...

AD LINK SUPPORTING HEALTH CARE REFORM (written by ...

There have been some GOGGLE ADs w/LINK on this blo...

PRRT 2ND ROUND- THERAPY RESULTS & MY TEST DATA-- I...

FRONTLINE REPORT- "SICK AROUND THE WORLD"- CAN THE...

MEDICAL NEWS TODAY- Lifestyle Choices Vs. Life Exp...

CARCNOID CONFERENCE- MONTREAL NOV 14 AND 15- PRRT ...

CNETS CANADA- CAD Conferences & Videos-Trmt of NET...

UTUBE Channel for CFCF on NETs and PRRT video! CON...

► October (14)

► September (16)

► August (21)

► July (16)

► June (20)

► May (30)

► April (17)

► March (11)

► February (13)

► January (15)

► 2008 (57)

► December (10)

► November (13)

► October (13)

► September (15)

► August (6)

IV) Other information:
There are other data in the blog that may be of interest for you:

UTUBE Videos and how to get to my channel - the FIRST TWO videos on the channel are taken from the Caring for Carcinoid Foundation channel. It is the Dr Baum PRRT video- please remember, there are 2 parts 1 is 40 minutes and covers the disease and imaging including PET Ct 68 scan and part 2 which is 25 minutes which covers PRRT therapy. Listen and watch this video 2 to 3 times as it is very important for understanding these topics. The UTUBE link will get you all the videos.
http://www.youtube.com/user/renalcarcinoidguy

Blogcast -Stupid Cancer Show -Click to listen to topics- its great for ALL AGES!- This is a Internet radio show and broadcasts on different cancer patients which I found of interest and entertaining.

S And P 500 & NET & Health Care Companies- companies that include the NET and cancer focused companies that should be of interest. It includes the companies that leased the rights for PRRT in the USA from Novartis, two small pharmacy companies that are doing research studies in EUROPE on Y90. I am not sure of who leased technology rights for lu177 and status. Click the link to the company to get stock information but you can find a link to the company web site and status drugs trials, new meds, etc....one way to tell if the small companies are doing something is look at the price! Upward movement would indicate positive activity! The companies of interest would be:
http://finance.yahoo.com/q/bc?t=1d&s=IPN.PA
http://finance.yahoo.com/q/bc?t=1d&s=MIPI
http://finance.yahoo.com/q/bc?t=1d&s=NVS

And other pharmacy companies I included...best way to understand where they stand on getting the USA close to the rest of the world with respect to NET therapies....

WHY IS PRRT NOT AVAILABLE IN THE USA?

MEDICAL NEWS TODAY HEADLINES- CANCER, DEPRESSION, HEADLINES-
Medical news with a lot of up to date data. There is a CANCER TAB, click that and you will find information on cancer and possibly NET or related articles.

There is plenty more data, just look for it, and you will find it! To be honest, with the links, this is a "one stop shop" web site for information, if you are searching for something relative to carcinoid/net disease. I hope you can leverage it for you benefit.

Lastly, remember to support the sponsors of the blog and click the ads! It will generate money, which in turn, I will DONATE ALL to cancer related charities and foundations. I post it all on the site so all can see where I sent the a small, but hard earned, contributions from the earnings in Goggle....

Thank you for all that took the time to support the sponsors!

=========================================================================

Finally, I got this email below from my cousin, and got a laugh out of it! Some of this from the net may be false, but after seeing and reading about Tiger Woods exploits and news, nothing would surprise me anymore.....so I believe this story to be true.....!

Its a homework assignment by a little girl. She turned in at school an assignment about what she wanted to he when she grew up! She drew a picture of her Mother, hard at work, and she wanted to be "just like her".

The Mother never checked it...until it came back from the teacher.....then there is a letter from the Mother explaining the entire situation to the teacher.....!

Its funny even if not true, however, Tiger in the church parking lot with a waitress from some diner?!?!? Also, why did they NOT get a sobriety test on this guy, asleep, bleeding, gurgling and in a state of confusion on the ground after an auto accident...???

Do you think the state attorney would say decline further testing a blood sample, if WE had rammed our cars in a fire hydrant and behaved as he did?

Folks, discrimination in this country is the COLOR GREEN! And being a great golfer!

Check your kids homework before they turn it into the school! This is an assignment of "what do you want to be when you grow up"?

(Here's the reply the teacher received the following day)

Dear Mrs.X,

I wish to clarify that I am not now, nor have I ever been, an exotic dancer.

I work at Home Depot and I told my daughter how hectic it was last week before the blizzard hit. I told her we sold out every single shovel we had, and then I found one more in the back room, and that several people were fighting over who would get it. Her picture doesn't show me dancing around a pole. It's supposed to depict me selling the last snow shovel we had at Home Depot.

From now on I will remember to check her homework more thoroughly before she turns it in.

Sincerely,

Mrs. X

Apple CEO Steve Jobs Thanks Donor - 9/9/2009- Video on thanking the liver donor- NO MENTION OF WHY HE NEEDED A LIVER ?

2009-12-03T22:53:00.140-05:00

HERE IS A RECENT VIDEO OF STEVE JOBS AT THE ANNUAL PRODUCT LAUNCH CEREMONY FOR IPOD AND COMPUTERS IN SEPT 2009....

ITS INTERESTING, BECAUSE HE LOOKS VERY SKINNY AND GAUNT.
IT IS INTERESTING TO NOTE THAT DURING THE SPEECH, HE ACTUALLY TALKS ABOUT THIS LIVER TRANSPLANT, THANKS THE DONOR, AND ASKS MORE PEOPLE TO BECOME A LIVER DONOR (DID YOU KNOW ONE CAN DONATE A PORTION OF YOUR LIVER, AS ONE DOES A KIDNEY?)

ITS WONDERFUL TO SEE THIS BRILLANT MAN IS ALIVE, AND KICKING, AND DOING WHAT HE LOVES IN LIFE.

HE ALSO MENTIONS HIS HEALTH (SEE PRIOR BLOG ON APPLE/STEVE JOBS CORPORATE MENTALITY) IN THE MEETING.

HOWEVER, AND FORGIVE ME IF AM NOT SENSTIVE HERE BUT 9 YEARS OF THIS SHIT HAS GOTTEN TO ME. HIS TALK OF ORGAN DONAR MISSES THE REAL POINT......WHAT CREATED THIS HELL FOR HIM IN THE FIRST PLACE AND WHY NOT MENTION IT?

HIS DISEASE HAS BEEN WRITTEN ABOUT IN MANY ARTICLES, INCLUDING A NUMBER OF ENTRIES ON THIS BLOG.

STEVE JOBS HAS NEUROENDOCRINE CARCINOMA CANCER WITH THE TUMOR IN THE PANCREAS, WHICH WAS THE CAUSE OF HIS CANCER RELATED LIVER FAILURE (THE TUMORS DISPLACED HIS LIVER........(BTW, IT WAS COMING AFTER ME ALSO, MY TUMORS HAS COVERED 60-70% OF MY LIVER! I WAS ALSO IN A LOT OF PAIN (THE LIVER HAS A "CAPSULE" COVERING IT AND IS FULL OF NERVES-- TOUCH IT, ENLARGED LIVER DUE TO TUMORS FOR EXAMPLE- AND ONE SEES STARS W/ THE PAIN***).

ALSO, TUMORS WILL SHUT YOUR LIVER DOWN WHERE IT IS UNABLE TO ELIMINATE THE POSION IN YOUR BODY, AND EVENTUALLY YOU DIE A VERY NASTY DEATH!
THIS IS ONE OF THE AREAS THIS DISEASE ATTACKS FIRST IN ITS EFFORTS TO KILL YOU, AND IT WOULD HAVE IN MY DEATH (OR THE SMALL INTESTINES,OR THE BONES OR THE LOWERING OF WBC DUE TO THE CANCER, OR ...)!

MR JOBS CANCER IS CALLED AN ISLET CELL CARCINOMA, I THINK, AND IS A SLOWER GROWING TYPE OF THE DISEASE, THAT IS WHY HE IS ALIVE SO MANY YEARS AFTER THE INITAL DIAGNOSIS.

MR JOBS IS BLESSED TO ALSO HAVE THE RESOURCES TO HAVE ACCESS TO CUTTING EDGE SURGERIES, AND ADVANCED IMAGING & SCANS.
HE WAS RUMORED TO HAVE GONE TO THE COUNTRY OF CHILE FOR A PETW/GALLUIM 68 AND CT SCAN, TO ENSURE HE DID NOT HAVE TUMORS OUTSIDE HIS LIVER. IF SO, THE TRANSPLANT WOULD NOT HAVE BEEN FEASIBLE.

OUT OF COUNTRY SCANS ARE NOT COVERED BY INSURANCE, WHICH TYPICALLY PEOPLE CAN NOT AFFORD.

MY DISAPPOINTMENT IN HIS REMARKS IN THE MEETING, AND HIS STATEMENT, WAS THE OMMISSION IN THE STATMENT, RELATIVE TO THE LIVER TRANSPLANT. THE LIVER FAILED DUE TO HIS PANCREATIC CARCINOID CANCER WHICH METASIZED TO HIS LIVER.
FORTUANTELY, SO FAR, IT HAS ONLY GONE TO HIS LIVER, AND THEREFOR, HE WAS ABLE TO RECEIVE A LIVER TRANSPLANT, WHICH HAPPENS, BUT RARELY, TO PEOPLE WITH NET TUMORS.

I WISH HIM AND HIS FAMILY THE BEST. HE ACTUALLY IS ONE OF THE MOST BRILLANT PEOPLE IN THE HISTORY OF THE WORLD IN MY BOOK!

HOWEVER, FROM SUCH A PLACE AND POSITION, I CAN NOT "FIT" WHY HE DOES NOT DO MORE, OR SOMETHING, AN YTHING, FOR THOSE PEOPLE THAT ARE DYING, SUFFERING AND STUGGLING WITH NET DISEASE AND AFFORD THE TREATMENTS AND SCANS NECESSARY TO STAY ALIVE WITH THIS INSIDIOUS DISEASE.

AS NOTED IN MANY STUDIES ON HEALTH CARE IN AMERICA, WITHOUT RESOURCES, MR JOBS MAY NOT BE ALIVE TODAY, AS THIS IS A COUNTRY WITH A MEDICAL SYSTEM BASED ON MONEY!

"KEEP YOUR HANDS OFF MY HEALTH CARE"?!?!

MY INPUT, AND DISAPPOINTMENT IN THE SPEECH; HE MENTIONS THE LIVER TRANSPLANT, BUT OMITS TO MENTION THE REASON WHY HE NEEDED A TRANSPLANT IN THE FIRST PLACE!?

JUST BRAINSTORMING HERE, BUT WHY NOT TAKE 30 TO 45 SECONDS AND STATE:
" I NEEDED A NEW LIVER AND GOT A TRANSPLANT!
HOWEVER, THIS LIVER FAILURE WAS DUE TO AN INSIDIOUS CANCER, NEURENDOCRINE CARCINOMA/CARCINOID, WHICH STARTED IN MY PANCREAS. I WAS ABLE TO AFFORD THE BEST TREATMENT AND ALSO GOT A "gold standard" PET SCAN IN AN OUTSIDE COUNTRY, NOT AVAILABLE IN THIS GREAT COUNTRY, TO DETERMINE MY CONDITION AND ADDITIONAL CANCER AREAS. THIS SCAN CONFIRMED I QUALIFIED FOR A LIVER TRANSPLANT,."
"PLEASE, SUPPORT CARCINOID CANCER FOUNDATIONS & RESEARCH CENTERS, AND THEIR EFFORTS TO FIND A CURE AND TO BRING THERAPIES AND TREATMENTS TO THIS COUNTRY THAT CURRENTLY ONLY THOSE WITH THE RESOUCES ARE ABLE TO UNDERTAKE. WRITE CONGRESS, SENATE, THE PRESIDENT AND THE FDA AS TO WHY CUTTING EDGE TREATMENTS ARE AVAILABLE IN OTHER COUNTRIES, BUT NOT AN OPTION HERE IN THE UNITED STATES. "

"DUE TO THIS CANCER, WHICH HAS CAUSED ME SO MUCH MISERY AND PAIN AND EXPENSE, AND WHICH DOES THE SAME FOR THOUSANDS OF OTHERS, I RECEIVED A LIVER TRANSPLANT AND AM BLESSED TO NOW HAVE A NEW LIVER!
LET'S FIND A CURE AND BRING THE TREATMENTS AND TECHNOLOGY AVAILABLE TO OTHERS WITH THIS DISEASE OUTSIDE THE COUNTRY!"

HERE IS THE VIDEO......BTW, AS NOTED BEFORE.

I DO NOT PURCHASE ANYTHING RELATED TO APPLE INC DUE TO THE SILENCE, WHICH I FIND INCOMPREHENSIABLE.

ITS JUST ME, AS I POST MY DAMN SCAN ON MY "INNARDS" ONLINE TO HELP OTHERS.

AS NOTED, HE IS A "PRIVATE MAN" WHO ALSO HAPPENS TO GLORIFY IN GLOBAL MEETINGS FOR HIS COMPANY, AND HE DOES WHAT IS RIGHT FOR HIM, HIS FAMILY, COMPANY AND SHAREHOLDERS.

HOWEVER, I TRUST THAT OTHERS WILL RESPECT MY INPUT, AND RECOMMENDATION AS TO WHERE ONE SHOULD MAKE A STATEMENT...

.ITS ONLY ONE PERSON, GOING BANKRUPT AND STRUGGLING TO STAY ALIVE AFTER 9 YEARS WITH THIS DISEASE, BUT I WILL MAKE MY VERY SMALL STAND FOR MY OWN SELF.....WITH THIS DISEASE AND THE PAIN AND AGONY IT CAUSES---

I AM AGAINST .......INDIFFERENCE! WHEN PEOPLE ARE DYING!

http://www.youtube.com/watch?v=Snn-u101fbw&feature=related

PREVENT CHRONIC KIDNEY DISEASE VIA NEPHRON SPARING SURGERY! article link below!

2009-12-02T17:50:00.004-05:00

NEPHRON SPARING SURGERY- USE THIS IF TUMOR IS SMALL AND/OR YOU HAVE METS...
CLEVELAND CLINIC IS THE BEST PLACE FOR KIDNEY SURGERY!

I have written about this a lot...NEPHRON SPARING SURGERY WILL SAVE YOU FROM CHRONIC KIDNEY DISEASE down the road.
this article from ONCOLOGYSTAT DISCUSSES the issue of:
A comparison of patients undergoing partial or radical nephrectomy for renal tumors ≤4 cm showed that nephron-sparing surgery should be attempted to prevent CKD in eligible patients with small renal masses, especially those with diabetes

The link below is an excellent article and one you should PRINT OUT AND KEEP WITH YOU IF PRESENTED WITH A RENAL MASS AND A DISCUSSION OF OPTIONS.......
During my surgery, prior to, I ASKED IF "WE COULD JUST REMOVE 3.3 cm mass on the outer edge of the horseshoe kidney. Remember, at the same time, I was showing a grade 4 focus area in the liver, which could not be correlated on CR or MRI or ultra sound....but the lesion showed up in 6 months as a 1.2cm lesion (what should this have demonstrated to the MD following my case, to those of you following and learning from my blog????- think about it and I will tell you at the bottom).

Net, I now suffer from advanced cancer with renal insufficiency, moderate.
I should have, once I asked and was told "IT WAS TOO DIFFICULT" GOTTEN UP AND GOTTEN A SECOND AND THIRD OPINION......

IF YOU DON'T DO IT, IF YOU DON'T DEFEND YOURSELF AND GET THE RIGHT DATA, YOU WILL DO WHAT I DID....REMOVE 97% OF A GOOD KIDNEY, AND NOW DEAL WITH ADVANCED CANCER AND MODERATE RENAL INSUFFCIENY.

IF THE GOOD LORD BLESSES ME AND I LIVE LONG ENOUGH, I MAY BE FACING KIDNEY FAILURE IN THE FUTURE!

Become you own advocate, learn and ask the right question when going into a surgery and always, always get 2 to 3 opinions on the surgery and process if you can. Find the best place (for kidney it is Cleveland Clinic) and then go into whatever you are doing with the right data and feeling good about your decision.....

DO NOT DO WHAT I DID OR YOU WILL BE WRITING A BLOG WORRIED ABOUT YOUR NEXT RENAL PANEL TEST!

Below is the detailed article...read it!

ANSWER TO MY QUESTION-- IT SHOULD HAVE TOLD THE ONOCLOGIST THAT, IF I LIGHT UP ON OSCAN WITH A GRADE 4 FOCUS AREA AND THEY CAN NOT SEE IT ON A CT MRI AND INOPERATIVE ULTRASOUND, THE PERSON IS EXTRA SENSTIVE TO THE SCAN AND HAS A HIGH PROBABILITY OF SUCCESS WITH PRRT!
ISSUE IS DONT REMOVE THE FUCKING KIDNEY WHEN YOU HAVE METS ALREADY SHOWING AND THE LESION MEASURES 3.5CM......!

pdf FILE
http://www.oncologystat.com/Images/JS2080E_Jeon_tcm8-220873.pdf?pom=y&country=United States&profession=Consumer/Other

Oncology News, Journals, Drugs, Regimens, Conferences - OncologySTAT
http://www.oncologystat.com/index.html

What do you talk to a cancer patient about?

2009-12-02T15:56:00.002-05:00

I WROTE ABOUT THIS WHEN MY STARTED MY BLOG....I THOUGHT IT WAS WORTH REPOSTING. I WAS IN WORSE SHAPE THEN AS NOW, SO I CHANGED IT SOME BUT THERE ARE SOME ERRORS BUT IT'S GOOD STORY, I THINK.

What do people talk to about for those with cancer?
At times I hear/see that people don't want to talk to cancer patients because they don't know what to say to because of "the situation", or are so uptight at the disease they are hard pressed to talk to about anything or afraid....also, to be fair, after a while, it also becomes hard on the patient as those things in life that made things "normal" are no longer there or changed!

Why is it that when one has a terminal disease, dying, others are uneasy to talk to them anymore? The calls stop, the conversations are brief and the phone hangs up when I answer. Why? Because they don't know what to say anymore?

I thought about this a lot. And I thought about my Mother, when she was diagnosed with Alzheimer's disease and started to decline in the late 1990's. What happened next?

I started to slow down my telephone calls to my father and sister, and to my Mom..... why? Because I didn't know what to say to her/them anymore? Actually, it was hard to hear my mother, a woman who worked for some 20 something years, because her first husband left her at 19, and raised me and her by herself, working as a executive secretary. She rapidly lost her ability, to think, reason, talk and discuss in a normal manner. I did not know what to say to her, or to the people who were taking care of her--my father and sister-- because "I didn't know what to say" anymore. But also, I did not want to call and hear my Mother ramble, or laugh out loud without reason or logic, I could "hear her dying" and it made me feel uneasy. It made me feel uncomfortable, sad and angry I could not do anything to help. I didn't know what to talk about, nor could I bear it. I now realize how stupid and wrong I was, and lost an opportunity which would have helped everyone, including myself. I lost it, and will never have a chance again....!

And now it's my turn! A person which in the past was full of energy, worked out, humor (if I could say so myself), started to work at 16 years of age to support himself, went to college and paid for it myself, graduated, got married right way, and started a family in no time! I have worked in Finance as cost account, corporate controller and finance manager in a fortune 20 company, and prior to that, as a cook, bartender, factory worked.

Now I am having a difficult time remembering fairly simple tasks, failing memory, and I used to be in pain, fatigue and diarrhea, most of the time prior:
NOTE- THIS WAS PRIOR TO PRRT THERAPY (things have changed for me for the better Bad Berka and Dr Baum! Thank God!)

A semi-optimistic, well, more optimistic than in the past, coached kids soccer and hockey, and now is trying to figure out what the hell lies ahead in line with staying afloat. I am still the head of household. with bills (many many of them and majority from health care companies that have their hands in the system that I never even knew were involved), w/kid in college, one working and waiting, another successful and married to a wonderful man, many health insurance issues and disability issues. New treatments to research, MD appointments, and a new treatments which I pay for OUT OF POCKET IN GERMANY.

I also have one very important item in my life that looms over everything. In addition to all of the above and responsibilities, I have one large, "fricking large ass "elephant"

in my space/room" called, advanced neuroendocrine carcinoma, intermediate grade, metastasized to liver, belly, lymph nodes, bones and other places...and were growing larger every day (prior to PRRT- HIROSHIMA BABY)...........!
In the past, a bad day was having a bad meeting at work, now ..............another story!

So, back to my initial thought and question. What do you I want from my friends and relatives, and how should they approach you in talking to you, what to say, or talk to me about?

First, if you know of someone like me, contact them talk to them every once in a while..... like you used to.
Talk about things you would talk about with a "normal person"-- the weather, movies, Obama, Palin, Tiger and sex drives of men, depression and comedy movies.

But, fair warning, during my conversation, I will, maybe, talk to you about my situation, and will give you the unvarnished truth- about my status and life as you may about your life and job. I need that to vent sometimes..... and that what friends and family are for I guess.

Finally, I will also talk to you about how my search for someone to help me from a spiritual sense....my catholic church, the mighty church I have been a member of for 52 years, has let me down in this very desperate time in my life!!! So where do I go now?

Finally, I don't know where I stand in the the overall "time remaining" with me and my life, but for the moment, I continue ahead against my objectives and plans. I also look more optimistically at my life due to PRRT and my results,

So, if you ever want to call and talk to a cancer patient one day, please don't hold back, contact them! Chat.....about anything and everything, including pigs with lipsticks, cancer vaccines, and ice cream, raspberry enemas, Palin, Tiger and where was he going in hi Jag at 2:30am

(Biggy Smalls had it right in the song "MORE MONEY MORE PROBLEMS" http://www.youtube.com/watch?v=cfG8z377kbM
ALSO, NATURE/THE GOOD LORD MADE MEN WITH A DISABILITY, TWO BRAINS, MAJOR PROBLEM (TIGER, DAVE, SC NY GOVERNORS, ETC, ETRC)..........

THE PROBLEM, WHICH ONE WINS A DEBATE, WHICH IS PRESENTED MORE FOR PEOPLE WITH MONEY AND POWER THAN NOT.....!

UTUBE RENAL CARCINOID CHANNEL- BECOME A MEMBER FOR FREE! AND SEE PRRT AND CARCINOID INFORMATION AND VIDEOS(PLUS MUSIC VIDEOS)

2009-11-28T14:41:00.004-05:00

http://www.youtube.com/user/renalcarcinoidguy

(this is me two months after PRRT therapy, self portrait...please all comments on rugged, handsome looks welcome!
Note pic below on a few posts down as to how I looked in Thanksgiving day walk, on VEGF inhibitor, tumor laden and looking aweful like "Father Death.
I hope this blog and my story and data and your research and tumor cells will helps you also decide on this therapy...its worth it
(also, to be honest, the appearance change is part due to reduced tumor burden (to be clear, I still have a lot of tumors inside as I went with very advanced tumor and to getting off of the VEGF inhibitor.)

I HAVE SET UP A UTUBE CHANNEL (www.youtube.com/user/renalcarcinoidguy) WHICH YOU CAN ENROLL FOR FREE. I WILL BE POSTING VIDEOS OF INTEREST RELATIVE TO CARCINOID, NET TUMORS, KIDNEY, ETC AT THE SAME TIME YOU WILL HAVE TO PUT UP WITH MY TASTE IN MUSIC AS I WILL ALSO HAVE MUSIC VIDEOS.

I SIGNED UP FOR THE "CARING FOR CARCINOID CHANNEL" WHICH INCLUDES A NUMBER OF VIDEOS OF INTEREST, INCLUDING THE PRRT DR. RICHARD BAUM VIDEO AND OTHER VIDEOS FROM CFCF.

I ALSO WILL SEARCH FOR OTHER VIDEOS OF INTEREST TO POST (if you know of any, please write me). Also, there are a TON OF VIDEOS on CF,. CFCF and CNETS and other Carcinoid sites which are linked on the left side.

UTUBE IS JUST ANOTHER LEARNING AVENUE AND PATH TO EMPOWERE AND LEARN ABOUT THIS DISEASE, TREATMENTS AND OPTIONS.....NOTE: IT WILL ALSO INCLUDE MUSIC WHICH YOU CAN USE TO RECORD, and DOWNLOAD ONTO YOUR NON APPLE INC MP3 PLAYER (SANSA MAKES A GREAT PLAYER and CHEAPER), WHILE YOU ARE BEING TREATED, OR IN WAITING ROOM IN HOSPITALS!
EVERYTHING IN THIS SPACE IS FOR A REASON.

THE LINK IS ON THE TITLE (CLICK IT AND IT WILL TAKE YOU TO THE RENAL CARCINOID GUY CHANNEL) BELOW (ABOVE AND ON THE TITLE):
EXAMPLE OF WHAT IT LOOKS LIKE
http://www.youtube.com/user/renalcarcinoidguy

Opiate Painkillers May Encourage Spread of Cancer- article by Medical News Today (link on site)

2009-11-23T22:17:00.001-05:00

Do Opiate Painkillers Encourage Spread of Cancer?

The link below is an article by MEDICAL NEWS TODAY, AN ONLINE MEDICAL NEWS WEB SITE THAT IS ONE OF THE BEST AROUND (IT TAKES NEWS ARTICLES BY CATEGORY BY INTEREST AREA--
( THE WEB SITE IS ON THE BLOG ON THE BOTTOM LEFT, CLICK THE CANCER TAB)

This link article covers two studies presented at the "Molecular Targets and Cancer Therapeutics' meeting in Boston Massachusetts. It suspects that opiate drugs, given to cancer patients for cancer pain (e.g., morphine, oxycontin, etc), is suspected to cause cell proliferation, invasion and migration in cell cultures in mice.

This study also adds weight to the MEDICAL evidence that OPIATE BASED PAINKILLERS, ENHANCE THE ABILITY FOR CANCER CELLS TO GROW AND SPREAD!

There will be clinical studies to confirm these findings, and if done so, will not only drop the price and usage of this drug in the future, it will change the type of painkillers used for cancer patients in the future!

The article also outlines correlating information relative to patients (prostate and breast cancer) patients that were given regional rather than general anesthesia and had FEWER RECURRENCES. There was also additional information on patients which is of concern for cancer patients.

This is very concerning news, as opiates based pain relievers are a godsend for cancer patients, to live a better quality of life with cancer, a painful disease. It is important to understand, if these findings are correct, so you can therefor work with you MD's to find different options, or get off the meds, other than opiate based drug therapy for pain.

Please show this article to your MD if you are taking opiate pain killers and have cancer. If I were you, and you can find an alternative, or quit, DO IT.
But talk to you Doctor and ensure you are aligned and working to in tandem with your before you do anything.

Great article, link to full article below:
http://www.medicalnewstoday.com/articles/171900.php

Health care Reform, USA, Sarah Palin, & Musica! Para cambiar los topicos...el conjunto Moenia! Tambien, mi plan de como yo me voy a convirtirme a un cuidadano de Espana y casarme con una mujer de Aleman (por el seguro de salud!!)

2009-11-20T20:55:00.013-05:00

NOTE- why does Health Care need reform- tonight on 60 minutes, Sunday Nov today!

These are some YouTube videos from on of the col-lest Mexican electronic bands. (from someone w/Tube channel)

When you are alone, trying to figure out world crises, point spreads and the stock market,health care reform, prrt status and "how long do I have and what will it cost me"?, its great to listen to.....and forget....!

This BLOG is an all "full coverage web site"! I hope this blog entry tailors the ads based on the post, so it will start posting Ads about Latin music, tequilas (Tres Generaciones, my favorite w/slice of orange, yes orange, try it, you'll never go back!), Hot sauces (I can not eat anything without hot or jalapenos anymore- 2 weeks working in McAllen Texas in 1987 is all it took!- Tip- if you like, when in a movie, order Popcorn with side of Jalapeno peppers, pop then with your popcorn, ORALE!), and also ads for TALL Ladders, tall enough to get over the "black wall" in Texas being built by Cheney's friends and company (Americas "Maginot Line")!

Goggle Ads

The ads will feed off key works on the BLOG POST, so this will hopefully change this crazy insurance reform ads which are popping up!

Note- If you please click the ads, they generate income, which I
GIVE TO CARCINOID/CANCER FOUNDATIONS AS
CONTRIBUTIONS! IT PAYS WHEN IT REACHES $100
SO i AM GETTING CLOSE AGAIN DUE TO YOUR HELP!

Why do I want to change the ads? Well, to be honest, we all need a break from the insanity of carcinoid and Nets, but most importantly the REAL INSANITY IS THE HEATLH CARE REFORM DEBATE and advertising going on AND "CITIZEN INTIATIVES", which, after much research, I NOW KNOW THIS REFORM IS NONSENSE and AM totally disappointed in!

One needs to "peel the onion" to understand how worthless this reform really is.......
In my work/career days, I used to COACH YOUNG PEOPLE THAT WORKED FOR ME ON THEIR WORK TO WATCH OUT FOR

"FORM VERSUS SUBSTANCE".

Well, in this particular reform bill, we have the following "camps":

1) Those opposed to any health care policy change--- ("KEEP YOUR HANDS OFF MY HEALTH CARE!". Btw, I went to their web site and posted a blog entry, well written for a change, with links to the Front line story, and my account and journey through hell, pleading for folks to think about what they are being told to support, and reconsider or at least take a balanced view!.......
IT WAS NEVER POSTED! This from the group that claims "big Government interference, Obama censorship" and the like....) Welcome to the world of Mussolini tactics my "hands off" friends!).

All the non change is being supported and funded by medical equipment manufacturers, pharmaceutical, CRO's. Insurance and related companies, medical malpractice lawyers, medical collection companies, other countries EU whose prescription medicines we help keep low by paying so much for (see FRONTLING BLOG ENTRY A FEW POSTINGS BELOW -Swiss and comment on cost of medicines).
Net, this is funded by those "feeding off the trough" of what we call "the US health care system". That are many efforts "grass root efforts" (I want some of that "grass") trying to derail this reform and one of them, within the Goggle Ads for health care reform and the Ad will pop up now and then (there is also an Ad For Reform)!

Then, on the other side, is those FOR HEALTH CARE REFROM.
The most disappointing thing I have come to learn from my research, is who actually wrote the HEALTH CARE REFORM bill? Did you think Rep. Maxine Walters did? Or the distinguished congressman from Boston, Mass. who in the past, hired a male hooker to work on his staff, and helped bring down the housing and banking industry through his leadership and fiduciary oversight of FANNIE MAE or FREDDIE MACK? Nope, if only we could be so lucky!

The bill, my friends, all 2000 pages of it, has been written by none other than THE HEALTH CARE LOBBY, THE FOLKS REPRESENTING ALL OF THE GROUPS ABOVE! Why can I say this?

Just take a look at what this does not have:
No Tort (malpractice reform), which in the the heart of ALL major industrialized countries HC system), no lower cost of medicine (stays the same if not higher, and creates a BIGGER DEFICIT, IN THE BILLIONS (I BELIEVE THE TRILLIONS)- (get ready world for more IOU's from us!). Now they are talking "One payer system is out", again, basis for any HC reform! What in the hell do we have in 2000+pages anyway? Why did not one single team go to any country to "better understand what works or doesn't? Hell, if they are afraid of flying, take a road trip to Canada, get some beers along the way, and find out if this thing about 'how bad and getting in lines in Canada is all about'? At least do that, one road trip? Just one?! Nope, why do that when lobbyist know how to do it right!?

Please refer to a past blog entry article I posted on "whether this country is capable of addressing major social and economic issues with the system of government it has?"
Goggle it if you have an interest on my blog.

One of my hobbies, BC (before carcinoid) was world history, especially the rise and falls of world empires....The USA has all the symptoms of an Empire on the downward slide. If you read the "Economist" and other papers from outside the country, the perception, and talk and attitude, is the USA is a falling and failing giant, unable to address its issues and a crumbling empire within! People are looking to China, India, and the EU as places of leadership now.'
http://www.informationclearinghouse.info/article10698.htm

>>Whether its crime (one of the highest in the world per capita, if you exclude the "rainbow nation" South Africa.)

>>Racial issues which will destroy this country (note, the most powerful leader in the world recently had a "beer summit" due to an arrest of a tricycle riding AA Professor by a Caucasian Policeman. This is not just a black white issue but also Hispanic issue. Instead of working to create the "perfect state" noted by Martin Luther but instead, we are falling apart, little by little, I think.

>>Budget Deficits- continuing and climbing yearly, without an end in site or how to repay it?
Social Security- currently in a positive position, covering the deficits as it is incorporated within the budget numbers.

However, what does the #1 country do with the SURPLUS it accumulates in SS to help offset and pay when we do not have enough money to pay in the coming decades?
http://usbudget.blogspot.com/2009/03/fiscal-year-2010-budget-overview.html

It purchases Treasury bills, Governments IOU's with nothing backing it up....HI CHINA! We have a TRILLION dollars in these IOU's, which the USA is planning to cash in, kinda like going to Citibank for a cheap loan! And we plan to use it to pay off the and care for retirees that come into the system when the USA takes on the role of PROTECTOR AND MEDICAL CAREGIVER FOR ELDERLY.....(YES! Sorry to advise you TEA GUYS, THOSE YOU AGAINST REFORM, THE US IS IN THE HEALTH CARE SYSTEM and Manages our health care when we get old!
HOW DO YOU THINK YOUR PAPI GOT HIS HIP REPLACEMENT PAID FOR?!?! OR HIS 4-10 PILLS A DAYS FOR HIS HEATLH??? The fairy god mother? No, the fairy God Uncle Sam....

The economic budget deficit, and now add to the issue the health care reform, we continue spiraling out of control with deficits, which now account for a large % of our overall budget spending! This is called called in business, UNSTAINABLE!

The rest of the world, mainly the poor Chinese, are scared to death, as they hold all this paper called "promissory notes from the USA" in the billions, if not trillions, without anything in site as to how to finally address it (I say give them Hawaii, and East St Louis, and we call it even!).
Meanwhile, we bring in Health Care reform which is noted to drive the deficit even further.....which does not make sense UNLESS THE PROGRAM WAS WRITTEN BY THE HEALTH CARE INDUSTRY ITSELF. HELLO!

IN ALL OTHER INDUSTRILAIZED COUNTRIES, HEALTH CARE REFORM REDUCED THE COST OF HEALTH CARE AND BROUGHT OVERALL SPENDING DOWN. IN THE USA, HEALTH CARE REFORM INCREASES HEALTH CARE SPENDING?!?! Don't tell me it BC we bring in the uninsured? How do they get medical coverage today? They go to hospitals, fake ID and insurance or just go in, and get treated, and its passed on to Gov or to us.....one way or another, WE PAY! Come on down Guatemala!

SCREW IT I SAY! Expand you horizons and at the same time start to practice your Spanish as this in another problem, uncontrolled border management! (now that I think about it, next Germany trip, after my 4 hour "Guantanamo type interrogation" in the Detroit airport customs, I am going to come through Matamoros Mexico, pay someone with a 1974 Station Wagon, w/a big statue of the Virgin Mary on the dashboard, to take me to the border wall, jump it, with my ladder, and I will get back to the USA much quicker....and also, I can pee when I want to!! take that Detroit customs!

So today, I listen to the Mexican electronic music band Moenia, which is actually pretty good, in Spanish, so you can learn the language of our neighbors and new friends......(I am one of them BTW, 50% Cuban...that came to the country in 1964, by all things, A DAMN PLANE! Pan Am freedom flights, they were called back then, after the John Kennedy led "Bay of Pigs" failed invasion 9I should write about that day as I remember it well, mostly picking up bullet shells and finding the treasure of them all, live bullets), when our President, due to this lack of any leadership and focus (I can understand the second part though), failed miserably to do anything, except think about MMonroe singing him "Happy Birthday Mr Prez-E-Dent"............thank god for Catholic confession huh!?!? "Forgive me Father for I have sinned, since my last confession I have......."

Immigration, another unsolvable problem with this country! Throw in terrible leadership (as in Rome in declining days....lets see, republican party, Sarah Palin! P A L I N, selling books, riding snowmobiles, looking hot, looking out her backyard to Russia, learning about foreign affairs, and stuff like that. Yep, there I go again RCG!

Finally, here are the video songs and Spanish lessons for the day from UTUBE
(btw, I am going to create a channel and post it here for carcinoid/kidney and tequila videos and post it on the blog (replace the UTUBE I have):

http://www.youtube.com/watch?v=UmoYAUNmdFo&feature=related

http://www.youtube.com/watch?v=lvy0yAVxN2A&feature=related

http://www.youtube.com/watch?v=5dM5-SKBwkU&feature=related the best!

Disfrutar los videos!

Para mi amigo(a)s/hermano(a)s de Espana, ojala que puedas bailar esta canciones en los discos de Madrid! Como dicen en tu pais, "que se ojda el Carcinoid de merida"!
Tambien, VIVA mi favorito rey, Juan Carlos de Espana, (de historia, por el, Espana pudo cambiar a un pais democratico, duespes del mi favorito dictator, Franco sin problema...read about this guy...a true hero as much as anybody for what he did the years after Franco and unselfishly turned his country in a democracy!

El Rey de Espana, un hombre honerable y honesto! Y lo mejore, le gusta mandar al loco Chavez de Venezula que se,"cajate la boca, carajo"!
VIVA Espana!--- a si se asi!

Mira, yo soy de decendente Espanol (mis abuelos que fureon a Cuba) y estoy piensando que si esto sigue como vay en EEUU, voy a vivir en Espana! Pienso lo mejor es metirme en unos de los barcos en Africa, que van a las Isla Canarias illegalmente, y me van a tener que acceptar como Espanol cuando llego al terrino! A si tengo seguro de salud por el governor y vivo una vida fantastico! Y espana me accepta, enfermo con cancer y todo! Como hacen a tus nuevos hermanos, por todo Africa que viene en el mismo boate....desde Congo, Senegal,etc! Los nuevos Espanoles, de Africa, y yo tambiem!

To close my dysfunctional bilingual long winded BLOG, Health Care Reform-

Form versus Substance.....

what do you think?

forgive me father for I have sinned, since my last confession I have used the curse word "what the fuck" about 2010 times, more or less, I have also.....!

AD LINK SUPPORTING HEALTH CARE REFORM (written by health care industry btw)......

2009-11-20T17:49:00.001-05:00

This Ad on Goggle is a link SUPPORTING HEALTH CARE REFORM AND LINKS HOW TO WRITE YOU SENATOR IN SUPPORT OF THE 2,000 page, HEALTH CARE INDUSTRY WRITTEN, REFORM!

http://healthcarerepair.org/take-action/?gclid=CPvooufSmp4CFU1M5Qod_08YsQ

I HAVE NO IDEA WHAT TO SUPPORT!.....

THIS CREATES A DEFICIT WHICH IT SHOULD NOT....! AND I DO NOT THINK ANYONE IN GOVERNMENT AS READ IT....OR VISITED ANOTHER COUNTRY TO STUDY WHAT WORKS OR DOES NOT. THIS IS AN EXAMPLE IN THE "BEST OF DOING SOMETHING THAT TURNS OUT TO BE NOTHING BUT MORE EXPENSE"!

NET, WE EITHER HAVE AN 1) AD/SITE AGAINST HEALTH CARE REFORM OR 2) AD FOR HEALTH CARE REFORM WRITTEN BY THE HEALTH CARE INDUSTRY AND LOBBY.

OH TO BE IN GOVERNMENT AT THIS IMPORTANT TIME, LOW ON MONEY! THAT OR THE REFEREE ON THE FRANCE/IRELAND GAME... OOOHHHHLLLLAAAALLLLAAAA!

NOTE- WHATEVER HAPPENED TO THE 1200 MILE BLACK WALL THAT WAS BEING BUILT TO "KEEP OUT THEM ALIENS" WHO DO MOST OF OUR MANUAL WORK? HOW MUCH HAVE WE SPENT ON THAT THING ANYWAY AND WHERE IS IT?

BOTTOM LINE, I THINK ONE NEEDS TO GO TO MY SUGGESTIONS BELOW, RELATIVE TO WHAT ARE THE BEST NEXT STEPS RELATIVE TO WHAT TO DO W/RARE COSTLY DISEASE
(MATTER OF FACT, BEST OPTION FOR ME- MARRY A GERMAN CITIZEN, I THINK)......!

IF YOU FIGURE THIS OUT, WRITE ME PLEASE!
ALSO, POINT ME TO WHERE THE "TURTLE TUNNEL #2 IS LOCATED IN THE 2000 PAGES"?

There have been some GOGGLE ADs w/LINK on this blog stating "HANDS OFF MY HEALTH CARE" and wanting one to click to support rejection for any change!! I DO NOT SUPPORT THIS (HOWEVER, SEE NOTE ON WHO WROTE THE REFORM DOC.)!....Also, I have a link to the HEALTH CARE REFORM WEB SITE!

2009-11-15T14:18:00.009-05:00

WHY DON'T THEY TALK TO ME ABOUT DENIALS FROM "MY HEALTH CARE" WHEN I WAS DYING?!

It;s great when the biggest thing you deal with is sinus infection, hang nails and ED dysfunction. The system works great then! Just don't get really sick or wait until the "Government Health Care" system starts protecting you at age 67.5 by the name of Medicare and prescription health care plan. Otherwise, find a good attorney and find out about :
1) living in mobile homes
2) chapter 11 or better 7
3) Eating tuna for dinner in a can
4) Living via denials letters and calls from collection companies wanting "good faith payments"....while you car insurance goes up due to being a "credit risk" and on and on!

"DON'T TOUCH MY HEALTH CARE INSURANCE"?!?!?!

PEOPLE....PAID FOR BY "HEALTH CARE INTERESTS"......

I MAY POST THE DENIAL LETTER FROM MY HEALTH CARE SYSTEM SO WE CAN ALL READ AND SEE WHAT "MANAGEMENT OF YOUR HEALTH" BY THE "HEATHER'S OF INSURANCE COMPANY" ARE ALL ABOUT. DENIED WITH ADVANCED CANCER TO SEE AN OUT OF NETWORK CENTER 2 HOURS FROM MY HOUSE! MY CONDITION WAS NOT "LIFE THREATENING OR SERIOUS" THEREFOR, THEY WAITED, 14 WEEKS......UNTIL I WROTE MY COMPANY AND GOT A FAX APPROVAL THE NEXT DAY...

"KEEP YOU HANDS OFF MY HEALTH CARE"?!?!

PLEASE WRITE THIS FOUNDATION: (http://www.joinpatientsfirst.com/?p=1213#comments)

PAID BY DRUG AND OTHER MD INTERESTS WHICH STAND TO LOSE A LOT OF MONEY IF THE STATUS QUO CHANGES, TO SOMETHING RESEMBLING THE REST OF THE INDUSTRIALIZED WORLD.....

READ MY FRONTLINE POST 2 ENTRIES BELOW......LEARN..

THEN AFTER YELL "DONT TOUCH MY HEALTH CARE"!

> Below is the link to the HEALTH CARE REFORM PROPOSAL...all 1900 pages of it.....its should be 5 pages, basically, take the best of Canada, UK, Germany, Japan, Swiss and Taiwan (perhaps Morocco since they are ahead of us with heath care ratings) and COPY IT!

Warning- I have read some of this mess below including listening to a lot of discussion about "WHO WROTE THIS DOCUMENT"??? There were no congress/senate planes to visit other countries, no tort reform and nor medicine controls...

NET, I THINK, AND SO DO A LOT OF PEOPLE, BELIEVE THE MOST IMPORTANT DOCUMENT/LEGISLATION WAS WRITTEN BY THE DRUG AND PHARMUCITCAL INDUSTRY THEMSELVES......THE WOLF IN THE HEN HOUSE IS WRITING THE "HEALTH CARE REFORM" LEGISLATION!!!!!!

FORGET WHAT I SAID ABOUT SUPPORTING THIS.....NEXT RECO

WORK OUT
EAT WELL
DONT GET CANCER
MOVE TO CUBA OR COSTA RICA
WHY MOVE, WE ARE IN A MESS AND RECENTLY THE USA PRESIDENT WAS IN ASIA. THE PERCEPTION IS THE USA IS A DYING LEADER OVERALL........IN DEBT TO OUR EYEBALLS AND CAN NOT DEAL WITH ANYTHING THAT DOES NOT HAVE TO DEAL WITH LOBBING A CRUISE MISSLE AT AN ARAB COUNTRY! YOU KNOW, TOUGH TO ARGUE FOLKS....
START PRACTICINE SPANISH AS THE "BLACK WALL" IS NOT WORKING I DONT THINK.

BOTTOM LINE, THE DRUG/INSURANCE/MEDICAL INDUSTRY WRITTEN "HEALTH REFORM LAW"...ALL 1900 PAGES OF IT IS BELOW..(SEACH FOR A "TURTLE TUNNEL #2 IN IT, GOT TO BE IN THERE SOMEWHERE!)

http://docs.house.gov/rules/health/111_ahcaa.pdf