David's Journey with CML

Inpatient Rehab

2010-05-30T15:00:00.000-07:00

Well I was discharged from Presbyterian/St. Lukes Hospital in Denver and admitted as an inpatient for physical rehabilitation on Friday. So I am no at The Center at Centennial in Colorado Springs. It is a very nice facility and everyone are so nice. Even though it is a holiday weekend I have still received physical and occupational therapy. The meal choices are very limited but the food tastes good. So I am happy with the facilities and am happy my wife doesn't have to drive so far to visit with me.

The blood cultures taken before I left Denver have come back positive so I am no on anti-biotics via IV once a day. Still no word on what it is but it must be some sort of infection. With blood cultures it takes time for them to grow, and with the holiday weekend I don't expect to hear anything more until Tuesday. But otherwise I feel fairly good and today's PT went well for me.

Thanks for your comments on my previous post. I appreciate just knowing someone is actually reading these blog updates, especially when there is often a long delay from me.

Take care everyone,

David

Yes, in the hospital again

2010-05-27T01:35:00.000-07:00

Again I have lots to report but poor resources to write it. By resources I mean my eyes. I have my laptop here with WiFi but it is so difficult to read anything. But anyway, after four weeks out of my last stay in hospital I am once again back. I had just gotten over some sort of bug and had a scheduled appointment with my oncologist in Denver last Thursday. My muscles are wasting because of the high doses of steroids I have been taking. So while I have been here I have had all the different doctors and specialists see me, trying to fine tune my medications for my lungs, liver, kidneys, diabetes, high blood pressure and other c-gvhd issues not to mention.

I escaped a liver biopsy this morning when my lab report came back and the doctor halted the procedure. So the good news is that my liver function improved since yesterday and they want to continue monitoring. The same goes with high blood pressure and high blood sugars. We have made a lot of adjustments for the high blood pressure and it is starting to look pretty good.

Now, one of the main reasons I am here is because of the severe atrophy in my legs/arms. As I have said before the cause of this atrophy is the steroids. So one medication change has been to reduce the prednisone. I was on 60mg daily and am now on 40mg. Soon they will get me to as low as 20mg daily. The plan at the moment is to discharge me this Friday and admit me as an inpatient at a rehab facility in Colorado Springs. That is what I really need to help me get my strength back. I have no idea how long I will be there but it will also be so much better for my wife when visiting to drive down town Colorado Springs then Denver every day.

As for my eyes, the autologous serum tears didn't pan out after ten weeks. Prescription eye glasses won't work because of the c-gvhd on the outer surface of the eyes what they call steroid induced cataracts. I am scheduled for a cataract removal in June on the left eye because it is the worst. Even if it doesn't completely fix my vision, we are hoping I will see a great deal of improvement.

So that is it for now. As always, there is a comments link for you should you have any for me.

Take care,

David

MediKidz

2010-04-25T13:33:00.000-07:00

Thank you to one of my blog followers, Lucia, for bringing this website to my attention. This site provides children with medical information in terms they can understand. There are the MediKidz, comic book figures that children can relate to, and a virtual medical center world and virtual world inside the human body. Very cool!

Check it out at http://www.medikidz.com/home.

At home recovering

2010-04-05T15:01:00.000-07:00

Greetings,

After four weeks in the hospital I am now home and overall doing well. I am slowly gaining strength in my legs, which is one of my primary concerns at the moment so that I can get out more and do more. I am going in to the oncologist in Denver weekly for a few weeks of Rituxan infusions and blood checks. My platelets were really low while in the hospital and I also had to receive red cells so we are keeping an eye on that. Once the infusions are finished I should be able to have the PICC line taken out of my arm. Like the Hickman catheter, it has been wonderful because I was getting very bruised from IV lines in my arms.

Nothing else has really changed at home. My wife is kept busy as my caregiver and everything under the roof and outside the house taker carer of person. I try to do the odd little job around the house but wish I could do much more to help her. The boys are doing great and are a help too.

A special thanks to Don for his support and fantastic experience based information too. We share many symptoms and he has been able provide me with great recommendations and Internet links to top grade information. Thanks my friend.

- David

In the hospital again

2010-03-22T12:59:00.000-07:00

Hello fellow CML’ers and Caregivers.

I’m going to try to give everyone a quick update without boring you with the details. Although it will sound like a lot I assure you I am going to keep it short.

I was admitted to the hospital, same hospital as before, the Presbyterian/St. Luke Hospital in Denver, on Feb 25th, and it has been a roller coaster ride for my wife and I since. This was for that persistent cough, breathlessness and increased fatigue I couldn’t get rid of for at least four weeks. We went in to my oncologist several days in advance of a a regular appointment and they admitted me from there. Once admitted they found there was also another issue developing which has been diagnosed as HUS-TTP and is a known complication from taking two immune suppressive drugs together (Tac & Rap for the bone marrow people). I had consistently high blood pressure which they found difficult to control with meds. They believed it was a viral infection causing the cough but blood cultures take time to grow so they aggressively treated my lungs for infection in general. I have been on high doses of steroids and loads of antibiotics. Meanwhile, I also picked up a serious staph infection called MRSA (commonly found in hospitals) also in the lungs. A week after getting here my lower left lobe in the lung also collapsed. They thought it could have been a pulmonary embolism so all hands on deck to treat that. So I wasn’t looking too good the first few weeks here and they were close to intubation on at least one occasion. The whole team really worked very hard and did a great job getting me back and my breathing is much better again. In fact we believe I am at least back to baseline with my oxygen requirements at rest being very low.

As a result of all the medications I have been subjected to for treatment of the Bronchiolitis Obliterans Syndrome and infections, I now have also been fighting with the following issues:

• High blood pressure (mine is normally on the low side). So now I’ll need to monitor at home and take the meds as needed.
• High blood sugar counts, which means steroid induced diabetes. So insulin shots four times a day. My wife and I have been given training for doing this at home.
• Kidney damage. Monitored every day.
• Liver damage. Same as kidneys but not as bad.
• Loss of muscle and bone mass. This is actually a huge deal. I cannot walk without a walker and assistance and can’t do stairs at all on my own. But I am slowly getting stronger each day as physical therapy helps me with walking around the hallways and some resistance work.
• Nerve damage to my legs, feet and hands that they believe is drug induced.

I’ve had two CT scans of the lungs, an MRI of the brain, a bronchoscopy, a pulmonary function test, blood cultures and numerous blood tests, chest x-rays, and an ultra-sound of the liver and surrounding organs.
Every day I am seen by the attending physician from oncology and his nurse practitioner, the pulmonary doctor, a kidney doctor, a doctor from infectious disease, respiratory specialists, physical therapy, occupational therapy, and a neurologist. Well I am four weeks in the hospital on Thursday and the hope is to be released this week. They just want to make sure I am strong enough to get around safely at home and are hoping to stabilize my high blood pressure, as well as wanting my renal and liver functions to be good. Oh, this just in: I just finished with the PT guy and was able to walk around the hallways without my walker. Yeah! So now my release will be based on my blood pressure and getting me off the IV medications. They are also still watching my kidneys and liver but I’ll be continuing with blood work while at home.

Finally, I want to thank my wife who has been riding this wave with me the entire time. Every day, she drives from Colorado Springs to Denver to spend time with me and to keep in the loop with my medications and care and helps keep my spirits up. I love you honey!

Please comment if you have any questions.

Kind regards,

David

Long overdue update

2010-02-13T12:07:00.000-08:00

Hello my dear followers. First I sincerely apologize for letting so much time go by without an update. No excuses, but there is a bit to tell you. I have no notes or calendars in front of me so this will not necessarily be in any kind of chronological order. Still, I hope it makes some sort of sense.

First I'd like to say my wife's neck surgery went well and although she still feels the pain she is slowing healing, a process that takes the full year. But she is a real trooper, especially these past several months since her surgery.

In early January I had a routine oncology appointment with my new doctor in Denver, except that he wanted to try an IVIG infusion, which I had never tried at that point. (Please look it up if interested as I myself still don't fully understand what it does or how it helps). So my wife drove me into Denver early for this four hour infusion and than a visit with the doctor. The only thing new was that my bone density DEXA scan came back and I now have osteoporosis in the hips and my legs and lower spine is no better with osteopenia. And on that note my legs and knees have been quite sore lately, sometimes waking me and keeping me awake. The doc believes it is most likely due to some of the meds I'm taking, like Fosamx +D, which is for the bones. Ok, so we are on the way home after the appointment and I begin feeling quite ill. Hot sweats and cold chills that night, a severe headache, upset stomach, and diarrhea throughout the night. So we made an appointment to go back to Denver but a snow storm was coming at us from that direction. We went on base to Acute Care instead but the doctor wanted me sent to ER because of stem cell transplant history and chronic-GVHD issues. He was good enough to get me an ambulance to take me to Prespretarian/St. Luke Hospital in Denver, which is where my oncologist and other staff perform bone marrow transplants. So they have their own wing for BMT patients. Exactly what we needed.

Well this is getting long so the bottom line is that they admitted me and kept me for three days for testing and observation. Everything came back negative except my (hydro)cortisone levels were low (more meds for that). My oncologist determined that he must have done it to me with the IVIG infusion. He said it is not often but people have been known to have adverse reactions like I did. He said their are different batch lots that we could try or a slower infusion rate, etc. I see him again early March and we'll discuss it further. The side affect was not fun and it took me several weeks, if not a month to fully recover from it so I want to be a bit cautious about trying again. I need to learn more about the benefits I guess.

I had a follow-up appointment with my oncologist's colleague the week after I was discharged from the hospital and he believes I once again have c-GVHD of the GI tract so I am back on Entocort. I just can't seem to cut back on my meds.

As for my eyes, I have been using the autologous serum tears for five weeks now but I got the instructions wrong initially and was only using them twice a day instead of four times. So to this point I am not seeing any improvement. But I know this sort of treatment can take time, which I have plenty of. I also had another lens patch put back into my left eye for pain relief but I think it has fallen out again because that eye is always stinging. I've been corresponding with Don about they c-GVHD of the eyes issue and he has been so helpful with his experience and knowledge. I really appreciate it Don and I will be asking about those Ciba lenses next time I am in. I know my eyes aren't bad enough to qualify for the Boston lenses so I won't even bother.

Ok, this is getting really long now so to wrap up, a couple of days ago I began coughing from the chest with some yellow mucus as well as a slight sore throat. Went into the local doctor who said other than the cough I am looking really good. So I am on Guaifenesin/Codeine syrup, which is to help loosen up the mucus (codeine to help with the chest pain from coughing). I do feel today I am coughing less so fingers crossed. I really don't want to end up in ER again.

Well I apologize for such a long post. It is my fault for procrastinating. Also, I don't want to leave this with such negative feelings. Overall, I am doing well and last week was finding myself able to get out of the house more often, including several walks around the neighborhood to walk the dog.

Happy Valentines,

David

5...4...3...2...1...REMISSION!

2009-12-08T10:31:00.000-08:00

We just got a call from the oncologist's office yesterday and the fantastic news is the PCR for bcr-abl was negative. Some of you may have remembered I just celebrated my second bone marrow transplant (bmt) birthday, on November 30. It was great. We had a jumpy castle, a petting zoo and clowns. Ok, actually we only had one clown; me. With these lungs I was almost unable to blow out those two candles (I think my youngest son helped me).

And just a few other things to catch up on. First, I took my wife to Denver this morning for her second neck surgery, which should begin at 12 noon. Of course my thoughts and prayers are with her at the moment.

I saw a cornea eye specialist and for starters he has put plugs in my eyes. This is supposed to keep tears on the eye longer because they can no longer drain where the plugs are. The next thing he has recommended for me is Autologous Serum Tears, which has apparently has some great success. People suffering from severe dry eye syndrome, including that caused by C-GVHD, are the prime candidates for this treatment. First they are testing my blood for HIV and HEP A,B,C. Once those results come back negative I go back to the lab and they draw 15 tubes of blood. It gets shipped to a pharmacy in California where they turn it into red cells that are full of good stuff. They send me three months supply and I use them as drops in my eyes twice a day. I still want to contact the Fred Hutch to get their blessing before I move forward but hopefully this is something that will work for me. Finally, the doctor said he can get rid of the cataracts anytime but recommends we wait until they because a real issue.

Lea, I cannot wait for you to get your appointment in Boston to hear what your impression is of the Boston lenses. Last I heard you had to postpone the trip. I mentioned them to my doctor but he said they are really a last resort because of cost and need to travel to Boston for eval, fitting, etc. And I don't think even my right eye is severe enough.

Overall I am feeling pretty good except that I seem to be breathless and tired much more lately. I just had another pulmonary function test yesterday and there is no change, hanging in there at FEV1 41%. I have to make these lungs work for at least three more years because they won't even think about a lung transplant until five years post bmt.

I have finally finished my UMUC Network Security course and am signed up for Cryptology beginning late January. That's about it. We've had lots of snow these past two days and the boys got a "no school" day today. Nice day to sit by the fire for some total laziness.

Thank you all for two years of wonderful support, emails, phone calls, and blog comments. And continued success to my fellow CMLers and BMTers out there. I hope 2010 is a great year for you all.

~David

The eyes have it!

2009-11-23T19:56:00.000-08:00

Cataracts that is. I had a follow-up appointment with my ophthalmologist onbase after four months because my eyes haven't gotten any better. In fact I think they are worse. I can't even get very good focus using my magnifying glass. We the cataracts explain that. My left eye is worse then the other and besides the affected vision, they tend to hurt a lot, as if there is sand in my eyes. I put drops in to sooth them and then I see worse because of the fluids on my eyes. Just one viscous circle. So the doctor has referred me to a corneal specialist who as luck may have it, is also at the Air Force Academy. What I do know is that these cataracts are steroid induced and they can be treated or surgically removed when the time comes.

Last week I also saw my primary care doctor who has adjusted some of my meds to see if we can't get my energy levels higher. I also saw a pain management specialist, who after reviewing all the evidence, has decided to begin with an MRI of the thoracic and lumbar areas and to try me on oxy cotin, which is morphine in extended dose of 12-hours. If it doesn't work out he may increase the dose or try something else. My entire body aches at times from medication side affects, bone density loss, chronic graft versus host disease (c-gvhd) to the eyes, mouth and lungs and my chronic back and abdominal pain.

And finally, I saw my new oncologist in Denver and my wife and I really like him. He obviously has the knowledge in bone marrow transplants we were looking for. In fact, he spent some time at the Fred Hutch and now performs BMTs in Denver. He wants to fight my lung disease a bit more aggressively and so has prescribed me with Sirolimus, another immunosuppresant drug. He also reduced the Tacrolimus because Sirolimus tends to cause the Tac levels to rise. And in fact they did, so much that for now I have come off the Tacrolimus but have increase the prednisone to 60mg. And right when I was shaving a few pounds off my belly. I guess it will soon be back to the 2am eggs on toast and other nightly delights.

Well I can see that my updates are sounding more like gripe sessions. Overall I cannot complain. I have a wonderful family at my side, including a lovely wife who is always there for me, not to mention taking care of the boys and herself. She goes in for a second round of neck surgery in two weeks.

Love to everyone,
~David

Kareem Abdul-Jabar joins us with CML

2009-11-10T20:36:00.000-08:00

As said as it is, NBA's basketball star Abdul-Jabar was diagnosed last December with CML and is apperantly a paid spokesman for Swiss Pharmasutical Novartis. Now why didn't they offer me that gig a couple of years ago?

Read more about it at FoxNews.com.

Good luck to Kareem and the rest of our CML patients and their families.

~David

P.S. Thanks to my brother Daryl for the article.

Temporary Disability Retired List update

2009-10-09T20:58:00.000-07:00

A couple of days ago I received a letter from the TDRL Board President letting me know they have decided I am to remain on the TDRL because I am still not fit for active duty and my condition is still not stable. I look at it as a free return flight to San Diego where I can visit my parents, twin sister, brother, aunt and some great friends.

I continue to have my set-backs with days I find it difficult just climbing a flight of stairs. Some of my complaints are most likely related to side affects of the antibiotics I am still taking. So I hope to be feeling better once I finish those meds in two days. My white cell counts are still high but a little lower then the last report so the doctor is hoping the antibiotics are winning to fight an infection. But I have a pain in my left side just under my rib cage and I know from personal experience that this is where my spleen would be if it is getting bigger, like it did when I was originally diagnosed with CML. My doctor believes it is most likely my intestines I am feeling and my wife reminded me that the CT-scan I just had should have picked up an enlarged spleen. But I think because I have experienced so many cases of bad news with regards to my health that I now tend to be rather pessimistic.

Anyway, my darling wife has found a new oncologist for me at the Rocky Mountain Cancer Centers in Denver and I see him later this month. I expect he will order another PCR test to look for any signs of BCR-ABL, to ensure there is no sign of relapse. A negative result will certainly put me at ease.

And even more bad news on the Cox front; my poor overworked wife has been having more problems with her neck. Remember, late last year she underwent two major surgeries; one on her back and the other on her neck, both requiring titanium plates screwed in place on her spine. Well she just saw her surgeon about her neck and the verdict is that the bones did not fuse. So now she must get a CT-scan and most likely have to undergo the surgery again. But this time they will have to go in from the back of her neck and screw in another plate. I really feel for her because she is doing so much around here that she cannot afford to be in so much pain. Lately she has been caring for our two boys and for me almost full time. I love you honey and we are all thinking good thoughts for you.

Well that is it for now. I will probably post again after my oncology appointment or after I receive my PCR results.

~David

A struggle but hanging in there

2009-10-01T21:29:00.000-07:00

It has been some time since my last update, but I haven't been feeling that great. I have been feeling rather weak and fatigued lately but as other cancer champions can attest to, it comes with the territory. However, about ten days ago I received a copy of the Navy Temporary Disabled Retirement List (TDRL) reevaluation report from my San Diego trip. Nothing much surprising to me except that the blood lab report indicated my white cell counts were elevated, as were my neutriphils (the part of the white blood cells that fight infections). So my primary care doctor at the Air Force Academy ordered more labs and my white counts are still high. He also ordered another pulmonary function test (PFT), a CT Scan with contrast and some other lab tests. The PFT results are the same as the last test and my lungs looked fine in the CT scan. But the scan did find an abnormality of air entrapment in the intestinal walls. The docs are not sure exactly what has caused this but they believe I most likely have an intestinal infection and now have me on anti-biotics for two weeks. The side affects of that treatment have been stomach aches, head aches and diarrhea. I was in bed for the first two or three days but am feeling better now.

Meanwhile, my youngest son is home with flu-like symptoms and there is at least one case of a classmate who has the swine flu. So today my doctor started me on another medication as a precaution. Because of my immunosuppression and lung problems, the swine flu is currently my worst enemy. Before long I might find myself in a plastic bubble. Remember the movie, "The Boy In The Plastic Bubble" with John Travolta? That was in 1976; just a few years ago.

Another medication adjustment is that I am now on a prednisone dose of 20mg every other day; so effectively cutting my dose in half. Hopefully, this will help me to feel better than I have been. I am also attending pulmonary rehabilitation three times a week, which should help me get stronger. It is similar to the other rehab I was doing but lighter workouts and fully monitored during the session with EKG, pulsometer and blood pressure checks.

Other appointments I am waiting for include a sleep study this coming Sunday night, a pain management consultation, and some dental work if Fred Hutchinson approves it. The dental work includes two new fillings and a root canal where old fillings have crumbled to dust. I will also be seeing a new oncologist who I expect will order another PCR test to ensure I am still in that safe place called remission (especially in light of the increased white counts). I'm not too worried about that because the white counts are not very much over the upper limit of normal. Still, there is nothing like a good PCR test result to confirm.

That's about it. I am continuing working on my grad work and enjoying it this term because the topic is Network Security.

Thanks again for all your support and best wishes. My wife and I appreciate it. My poor wife is running herself into the ground because of my limitations. She is a real trooper and I am so lucky to have her by my side. I love you honey and happy anniversary (our 23rd).

National Jewish Health

2009-08-07T18:38:00.000-07:00

I am a week late posting this but to let you know how my pulmonary appointments went last Friday, they went as well as could be expected. My lung capacity remains at 42%, which isn't good but at least I am stable. The doctor also told me I do have air trapping in my lungs, which he said would account for the heavy, tightness in my chest.

The doctor, David Schwartz, did some of his training at the Fred Hutchinson and still has good friends there. So while I waited, he went to his office and called his buddies about my case. I was impressed with the quick and direct feedback. So they at the Hutch say I am on all the correct medications for bronchial obliterans (BO), which they called the PFAM program for chronic graft versus host disease (C-GVHD) of the lungs. Prednisone (steroids), Fluticasone (Advair inhaler), Azithromycin (Zithromax antibiotics), and Montelukast (Singulair). They (The Hutch docs) said I will need to stay on the PFAM meds for a year, then discontinue one of the four, wait six months, discontinue another med, and so on. Meanwhile, I am on oxygen as I need it, which is during and after any exertion and while sleeping. The doctor also recommended I get a pulse oximeter so I can keep tabs of my oxygen saturation during rest versus exercise and to compare how I feel to my oxygen levels, etc.

So, I think that is about it regarding the appointment. I do want to thank my buddy Mike W. for driving me to Denver and being there for me during the consultation. He is a great guy and a very good friend. He is still on active duty in the Navy but is planting his roots here in Colorado Springs for retirement. I also want to mention that my appointment at National Jewish Health was impressive. I liked the staff and the facilities and every appointment was ON TIME! I'm not kidding either.

On a lighter note, today I took my two younger boys to the Air Force Academy for bowling. We had a great time as usual but what was amazing was my bowling. My second game I bowled four consecutive strikes plus another three during that game. My personal best as well as the score - a 190. I don't bowl but I guess the ball I was using was magic. The bowling did tire me but I kept the oxygen going between bowls.

Well that is it. I have to get back to my research paper. If I didn't mention it before, I am working on my graduate degree online with University of Maryland University College.

More Appointment Updates

2009-07-25T09:47:00.000-07:00

Thursday I went to behavioral health on base and the doctor and I agreed to increase my Lexapro from 20 to 30 mg daily and to increase Ativan to 2mg at night to help me sleep and for anxiety issues. I have been feeling pretty good overall but I am getting a bit edgy again, most likely because of the news of lung disease, etc.

So I also saw the pulmonologist here in the Springs. My pulmonary function tests were the same as my last visit to his office, indicating my lung capacity is still 43% of full capacity. The doctor is happy I have not gotten worse but said that level is still indication for concern. He said I am too healthy for a lung transplant now but he believes it is a matter of time before it would be necessary. I guess I will find out more next Friday when I go to National Jewish Health to see the lung transplant specialist.

Oh, and the best thing is that I am now tapering my prednisone from 30mg daily to 20mg daily. Those levels are still much higher than what the human body naturally produces but less is good because it affects my mood, body weight, and who knows what else.

Lung Specialist Consultation Delayed

2009-07-18T18:22:00.000-07:00

Just to give you a quick update... I was scheduled to see a lung transplant specialist yesterday for some tests and consultation at National Jewish Health in Denver; however, the doctor had a family emergency so my appointment has been delayed. We are disappointed because it is not easy NOT KNOWING. I mean, I know my lungs are not perfect. As of the last pulmonary appointment several weeks ago I was told my lung function was improved but still serious. But is that "serious, you will be on oxygen for life", or "serious, you have less than two years on those lungs", or "its a miracle, your lungs are getting better."

Overall, I have been feeling pretty good, with some bad days thrown in there periodically. Yesterday I felt miserable but today I feel good. The prednisone steroids, although not good for my bones, have certainly improved my appetite. I now weigh 160 pounds, I have the round prednisone face, and I look pregnant (due in a couple of months). It hit me very quickly by surprise but I am now trying to tackle it. I try to walk at least 30 minutes each day, started stomach crunches, and have ditched the pound bags of spicy drops I have been so fond of. I have even backed off of my nightly dose of ice cream.

I guess that is about it for my update. I have several appointments next week so maybe another update next weekend.

David

MyCMLCare.com

2009-07-10T14:26:00.000-07:00

Bristol-Myers Squibb has announced a new website that offers a great resource of information and some nice tools for tracking treatments and side affects. I highly recommend adding www.mycmlcare.com to your favorites or bookmarks.

Bristol-Myers Squibbs 6 July, 2009 Press Release

Patents promote innovation

2009-06-25T08:34:00.000-07:00

The following is the opposing view from USA Today, June 16, 2009. USA Today's view can be found as my previous posting.

Opposing View: Exclusive gene-based rights spur vital research and development

By Jim Greenwood

Can a gene be patented? The easy answer is this: Genes as they exist in nature cannot be patented. No one can patent a naturally occurring gene or protein as it exists in the body.

Here's where it becomes more complicated: Researchers can isolate a protein or DNA sequence that can help treat or potentially cure a disease, like cancer or heart disease, and they can patent this discovery. Many, if not most, human diseases have their roots in our genes. More than 4,000 diseases are suspected to stem from mutated genes inherited from one or both of our parents.

Armed with this knowledge, scientists have developed more than 200 innovative new therapies and vaccines that have helped extend and improve the quality of life for hundreds of millions of patients. Researchers, for example, located the gene responsible for cystic fibrosis, then used that knowledge to create therapies that have extended the average lifespan of a person who has CF from 12 years to more than 40.

Like all other patents, gene-based patents protect the intellectual property of a scientist, researcher or biotech company, spurring investment in research and development. The Patent and Trademark Office has strict guidelines on patents, including the patenting of DNA molecules or genetic material.

Two recent studies, from the American Association for the Advancement of Science and a Department of Health and Human Services advisory committee, both confirm what a prior National Academy of Sciences report concluded: Patents do not hinder biomedical innovation. The HHS panel's study also found that patents are not the cause of access-related issues regarding genetic diagnostic tests, in particular.

Public debate over access to, and use of, genetic technology is a good thing. It requires the consideration of many factors, including coverage and cost, concerns over genetic discrimination and myriad regulatory issues.

Even so, banning patents on gene-related breakthroughs would slow biomedical innovation to a halt — taking away the hope biotechnology offers to patients suffering from debilitating diseases such as cancer, Parkinson's and HIV/AIDS — while doing nothing to address what is really a much more complicated set of issues.

Former representative Jim Greenwood, R-Pa., is president and CEO of the Biotechnology Industry Organization.

Government awards patents for Genes, stiffling research

2009-06-25T08:24:00.000-07:00

My mother gave me a USA Today newspaper clipping from June 16, 2009 of the following articles, which we thought were interesteding. This is the view of USA Today and the opposing view will be on my following posting:

Our view: Private interests shouldn’t control rights to features of natural world.

In 2006, Genae Girard, then 36, was diagnosed with Stage 2 breast cancer. She had a lumpectomy and chemotherapy. Then she underwent testing for mutations in the BRCA1 and BRCA2 genes linked to breast and ovarian cancer. Girard tested positive for BRCA2 and elected to have a double mastectomy and then a hysterectomy. As she made these wrenching decisions about her health, she collected second opinions at every step of the way except one — the BRCA test.

The reason: One company, Utah-based Myriad Genetics, owns the patent to the BRCA genes.

(Girard: Couldn’t get second opinion on a cancer test./ACLU)

Say what? Yes, the U.S. government grants patents to DNA sequences, the stuff of life. About 20% of the human genome has been patented.

One consequence of such patents is that only Myriad can test for the BRCA mutations. So, no second opinions. Plus, without competition, Myriad can charge more for tests. At more than $3,000, the tests are prohibitively expensive for many women, and not all insurance companies cover them.

Pharmaceutical companies have long used patent protection to recoup the costs of investment and to make initial profits on drugs. Fair enough. Unlike drugs, though, genes are features of the natural world. The biotech industry argues that by taking genes out of the body and isolating them, scientists are creating something that does not occur in nature and therefore can be patented. This, however, is like arguing that gold can be patented when it has been taken out of a mountain because it's no longer "in nature."

The problem began with a 1980 Supreme Court ruling on the patenting of biological organisms. Since 1982, based on a questionable interpretation of that decision, the U.S. Patent and Trademark Office has granted tens of thousands of patents for human genes and gene-related products.

Many of the patent holders allow virtually unrestricted research. But a few companies are aggressive about prohibiting others from profiting from research on their patented genes. That inhibits scientific inquiry.

Efforts to change the situation are underway in the courts and Congress. The American Civil Liberties Union, along with a non-profit organization, filed a lawsuit last month that challenges the patenting of the BRCA genes. On Capitol Hill, Rep. Xavier Becerra, D-Calif., is promoting legislation to bar gene patenting, which, he says, is "equivalent to patenting water, air, birds or diamonds."

It is possible that other solutions exist, short of a complete ban. The scientific world tends to be one of collaboration, not competition. But without strict curbs, for-profit companies such as Myriad — which declined to provide an opposing view to this editorial — too readily can use patents to slow and restrict research as they maximize revenue. (There might be "myriad dollars to be made in Myriad," CNBC's Jim Cramer said on his stock-picking show last week.)

Even though Girard has taken the most drastic steps to prevent her cancer from spreading or returning, the BRCA2 gene runs in her family. If one company continues to have a lock on it, that makes it more difficult to achieve Girard's wish: to make it easier for others, including her niece who might also carry the gene, to make better informed decisions about their own health.

Visit with the pulmonologist

2009-05-30T09:38:00.000-07:00

I got in for a follow-up with the pulmonologist yesterday and started with another complete pulmonary function test. The doctor told us my lung function is much better than when he saw me in the hospital over a month ago. My wife said, "yeah, David was really sick back then." The doctor then said, "yes, he was dieing, his lung function was so bad." My wife knew how bad I was in the hospital but I was so out of it that I cannot even remember half of what the doctor had told me. Until recently, I really didn't realize just how serious this bronchial obliterans (BO) is.

So the doctor said I have improved significantly in the past month; however, my lung function is still seriously low. He said I am operating on the capacity of one lung. My air stats are remaining above 90 at rest or slow walk. So he told me I can come off the oxygen when sitting around the house and if exerting myself, such as long walks, hills, stairs, etc., then I need to be back on the oxygen, but at a lower setting than before.

He told us again how the lungs are "stupid" organs that do not respond well to treatment and don't regenerate like other organs do. He advised we contact the Fred Hutchinson where I had the hematopoietic stem cell transplant (HSCT) for a consultation with a lung transplant specialist. He believes the chances of eventually needing a transplant are good and said it is better to be plugged into a system now rather than waiting until the last minute. He told us there is usually a narrow window for a lung transplant between when the lungs are bad enough that a transplant is needed and when the patient is too ill to be able to survive such a procedure.

Seattle Cancer Care Alliance has some interesting information on their website relevant to HSCT recipients with chronic graft versus host disease who are then diagnosed with BO. They state that 30 to 60 percent of HSCT patients develop some kind of lung problems. There is another good article at nature.com that goes into detail the issues of lung problems in relationship with GVHD after HSCT. They say the mortality rate for lung transplant recipients with BO is 61%. And according to Dr. Suckling, our pulmonologist, with BO you are on the clock, with seven years typically being on the optimistic end.

So I am in remission for leukemia but this thing is still trying to beat me down. Although the steroids are making very irritable, cranky, grouchy, and a number of other adjectives my wife tends to use, I am trying my best to maintain a positive attitude and take it one day at a time.

My advice to those of you have had, or are contemplating having, a HSCT, is to make sure when you get home after the procedure, and are being seen by your local doctor, that you are getting pulmonary function tests performed every three months during the first year post-transplant, every six months during the second year, and annually thereafter. If you read the articles I mentioned above then you will find it is very difficult to detect BO until it is severe, which is what has happened to me. Even chest x-rays don't pick it up. I had four of them during the months before I was recently hospitalized and nothing looked abnormal until the chest x-ray done while in the emergency room, which the doctor said the lungs looked elongated, similar to what they might look like if I were asthmatic, which I am not.

Well take care and thanks again for the support and prayers.

David

P.S. If you have anything to share that would benefit other CML or HSCT patients, then please leave your comments via this blog. I often get great emails from people with their own share of GVHD issues, medication side affects, etc. that I think others would love to hear about. So unless your privacy is the concern, please feel free to comment via the blog. I do check them and will respond where needed or requested. Thanks.

O2 Update

2009-05-09T09:18:00.000-07:00

I have been home from the hospital now for almost two weeks. I am now on oxygen most of the day and while I sleep. Without it I still get winded walking around the house and especially using the stairs. I am on prednisone steroids again, anti-biotics, and several inhalers. My appetite has improved tremendously because of the steroids and I gained seven pounds in a week. During the first week I was actually getting up at about 1am and eating an entire meal, but I couldn't sleep either. Sleeping a bit better now.

So I am feeling better at the moment but I am still pretty much stuck to the house, needing to drag small oxygen tanks with me if I go out. My insurance company has finally approved home visits from a nurse to monitor my progress. The nurse has also recommended getting me home physical therapy to increase my strength, which I agree will help.

My sister, Lisa, and brother, Stephen, flew out from California to spend some time with me and help out and I have really enjoyed their visit. And my mother-in-law flew out from Ireland for a couple of weeks. It is always great to see Elinor.

I should have another update in several weeks after another pulmonary function test of the lungs. I have received emails, phone calls and cards from so many of you and my family and I really appreciate your kindness.

Here is a picture of me outside my new favorite place.

Same Journey, Different Path

2009-05-02T15:38:00.000-07:00

Thank you to everyone who continues to keep up with me through my blog and email. I am sorry I cannot always respond personally to each email but I do try to.

For the past 18-months or so my chronic myeloid leukemia journey has been more about a journey post stem-cell transplant, which seemed logical enough. I have been doing pretty well overall and have remained in remission since I fully engrafted with my donor's blood shortly after the transplant.

Most of you know I have had a few ups and downs over the past six months or more with fatigue, some dizzy spells, feeling winded after light exertion like walking stairs, etc. I was especially feeling poorly a couple of months ago when it appeared I had picked up some sort of local bug here in Colorado Springs. Well I have been feeling poorly again so my wife brought me into the emergency room last Saturday because I was having difficulties breathing. The ER team placed me on IV and oxygen and began several tests, such as chest x-ray with contrast, CT scan of sinuses, and a high definition chest CT scan. I was admitted into Memorial Hospital that night for observation and more tests the following days.

So the bottom line is I have bronchiolitis obliterans (BO) which I have gotten from graft-versus host-disease of the lungs. Bronchiolitis is inflammation of the bronchioles and obliterans means the inflammation is at least partially obliterating the airways. One form of this is also known as popcorn worker's lungs, which is life-threatening and apparently irreversible.

They have already been talking about a multiple lung transplant and have been in consultation with the organ transplant specialists in Seattle. The doctors at the Hutch said they concur with the assessment of BO but want to wait to see how I do on various additional lung medications (steroids) before returning to talks about lung transplants. I am back home now, on full-time oxygen and taking loads of new medications, inhalers and respiratory lung treatments.

Well nobody promised me a flawless journey without a fair share of bumps along the way. Through this blog, I hope I can continue to inspire patients and caregivers to continue with your CML therapies and treatments with positive outlooks towards success. And of course I will use this blog as a venue for myself to learn the medical and technical aspects of lung GVHD and to share what I learn.

My CML Circle Drug CO-PAY Assistance Program

2009-03-12T19:14:00.000-07:00

Hello everyone. Me again.

I wanted to pass on some great news I have just found out about. I was recently contacted, via this blog, by Rachelle L., who wanted to provide information on behalf of Novartis Oncology about a program they have to offer.

The My CML Circle Co-pay Assistance Program provides support for patients throughout their Ph+ CML treatment by providing a co-pay assistance card to eligible patients who are currently taking GLEEVEC (imatinib mesylate) and/or TASIGNA (nilotinib). In addition to receiving co-pay assistance for these treatments, My CML Circle Co-pay Assistance Program also provides regular updates on Ph+ CML treatment and healthy living, along with information on topics like managing side effects and tips for communicating with your doctor.

For more information or to enroll, please visit www.mymclcircle.com or call toll-free at 1-877-966-2745.

The longest cold ever

2009-03-12T18:51:00.000-07:00

Well I was able to hold on to that cold/bug for a month and add bronchitis, even with ten days of antibiotics and an inhaler. Last week alone I saw three different doctors, went to five appointments between the Air Force Academy hospital and the oncologist clinic at Rocky Mountain Cancer Centers. I had three chest x-rays, three and a half liters of fluid via IV, three blood tests and one cardio echo gram. Tests were negative so the consensus was that I was tired and winded because of dehydration (I had 8 days of diarrhea too), which was the reason for the fluids.

Anyway, I am starting to feel much better now, thank you for asking. I started feeling better after 8 days on the antibiotics. We figure it has taken so long because of the suppressed immune system. I am still feeling very winded just from walking up stairs to a slight incline on walks with my son to school. That should correct itself with time. And the important bit; I am still in remission. Thank God for all you donors out there, although we could always use more. Tell your friends to sign up and save a life. We recipients appreciate it and so do our families.

So I am now scheduled for a colonoscopy for next Wednesday. It was supposed to be two weeks ago but I had to postpone because of the cold/bug. This procedure is to check for GVHD of the GI tract to make sure I am not flaring up again. The symptoms have been diarrhea and some nausea.

Other than that I have been keeping busy with my graduate studies. It has been difficult with the GVHD of the eyes and fatigue but I am hanging in there. I have already registered for my next course, which when finished will mean a graduate certification in Homeland Security. These credits also go towards the M.S. in Computer Systems Management with concentration in Information Assurance.

Well that's it for now. Thanks for staying updated.

David

The Nasty Common Cold

2009-03-02T18:05:00.000-08:00

Since my last posting, I received lab results from the doctor in Internal Medicine. He phoned to tell me my iron levels were low so I am now taking iron supplements. He also ordered a colonoscopy, which was supposed to have been last Friday, except that I have a cold so they postponed the procedure until the 18th March. I have had this terrible cold for over two weeks now and just haven't been able to shake it, despite several days in bed. So today I went to the Air Force Academy to be seen in the Acute Care clinic. I am finding that where most people would be given cold meds and sent home, I have been tested and prodded a bit more, just to be safe. So another chest x-ray and blood work didn't indicate anything out of the ordinary. My blood pressure was very low though, which the doctor contributed to dehydration. I have had diarrhea for the past three days and I have been so tired, to the point it can be hard to breath. After a liter and a half of fluids in an IV and I felt better. That is until this evening when I deposited that liquid as quickly as I took it in. Anyway, the doctor has given me an anti-biotic and an inhaler for the cold and wheezy chest. I hope to feel their benefits within a day or two.

I have my monthly oncology appointment scheduled for this Thursday so I will discuss the possibility that the chronic gvhd is coming back to my gut. I think it fits because just a week ago I finished the taper off of Budesinide, which is a steroid that helps the lower GI system.

My mouth sores have been hurting a lot lately as well. No help from the suppressed immune system which has been squashed even more with the cold. But for some good news, it would appear that my eyes are getting a bit better. Maybe the increase in tacrolimus is helping combat the gvhd.

I hope you are all well.

David

Them bones, them bones, them - my bones

2009-01-15T18:23:00.000-08:00

Yesterday I paid a visit with my primary care manager at the US Air Force Academy hospital. I really like this doctor in Internal Medicine. He is so knowledgeable, thorough and takes the holistic approach. We discussed my problem with trying to gain weight and he referred me to a cancer rehabilitation program. We discussed my chronic sniffles, he said my nostrils are real inflamed and he prescribed a new nasal spray, which seems to already be doing the trick. We discussed my mental health and he has prescribed me with Remeron to take along with the Lexapro I am already taking. The added side affects are drowsiness and increased appetite.

Finally, we discussed the Fred Hutchinson's suggestion that I repeat a bone density (DEXA) scan in about three months because of my previous results. The doc reviewed my numbers and recommended we begin treatment for osteoporosis now with a follow-up DEXA scan in a year. He has prescribed Fosamax plus D, which he said I would need to stay on for two to five years. And Fosamax requires plenty of calcium in the body so I need to continue with the calcium and vitamin D supplementation.

While at the hospital for my appointment I also went in to immunizations for my two-month booster shots, two per arm. Polio, HiB, Tetanus-Diphtheria, and Hep B. They had to use a baby needle because of my puny arms. And my right arm is soooo sore.

As far as how I am feeling these days, I have been in a bit of a slump lately, feeling especially tired and winded. So I have been trying to get out for more walks with our new toy poodle, Molly. I am also convinced that once I begin working with a cancer rehabilitation training specialist and begin to gain some muscle and weight, then I will begin to feel better. Meanwhile, I am still dealing with graft versus host disease (GVHD) of my mouth, eyes and maybe a little skin. Except for my eyes, I am not really bothered too much by it. It is difficult to see sometimes, especially with my left eye. If I don't see improvement soon I'll need to get eye glasses to help me read. In a week I am starting back with my graduate studies, picking up where I left off almost two years ago. But this time the Department of Veteran Affairs is picking up the tab.

Happy Birthday To Me, Happy Birthday To Me

2008-11-30T21:30:00.000-08:00

Hello my loyal followers. Yes, today is really my first birthday of my stem cell transplant and my wife, children and I celebrated with a nice cake. I cannot believe how fast this past year has gone by. Thanks again to all my dear family and friends who have supported my family and I. We really do appreciate it.

I hope you all enjoyed your long Thanksgiving weekend (at least those of you Americans who celebrate the occasion). As always, my wife cooked us a fabulous traditional turkey dinner and I am sure I did put on some much needed pounds. In fact my mother said she hoped I put on a good ten pounds. Sorry to tell you Mom but if I did then those pounds are now gone.

Nothing much has changed since my last blog except that I did go into the Air Force Academy hospital to get another PSA blood test done, which thankfully came back negative for signs of prostate cancer. So I am continuing with my increased dose of the immuno-suppressive medication, tacrolimus, and the meds for my mouth. I am also now taking calcium and vitamin D supplements, hoping for better bone density results in a few months.

Well it has been a long day and I am off to bed. My wife is very good to let me sleep in when I can and because of the 24-hour snow fall we have just experienced, the children have a two-hour delay for school in the morning. Yes! More sleep. Good night all. I still have to get up in the morning to shovel snow.