But even though I argued with the doctor on call here at the hospital late this afternoon, he/we made the decision it would be best for me to spend one more night.

I didn’t talk with either of my doctors (being stuck in the hospital over the weekend can be frustrating), I get the feeling my lower GI issues were bacterial, not viral.

The first clue:  I have made an almost miraculous recovery after three courses of IV antibiotics.

The second clue:  The nurses just hit me with not one or two, but three different antibiotic infusions.  My guess is one of  my blood cultures must have shown something bacterial was going on.

Regardless, I’m feeling a lot better; just a little loopy from so many antibiotics, so fast.  Have any of you ever experienced that antibiotic “buzz?”  I can only guess what it’s doing to my intestinal tract.  But in this case, maybe that’s a good thing.

My fever is normal, I’m no longer neutropenic and I should be released tomorrow mid-day.  So no worries!  I’m back “on air” and ready to rock and roll!

I get my next numbers late next Friday afternoon.

Feel good and keep smiling!  Pat

But it’s a good thing that she was home.  What was thought to be a short visit to see my local medical oncologist, Dr. Malhotra, at his clinic, turned into a late night visit to nearby Oak Hill Hospital.

With my fever holding around 102, Dr. Malhotra instantly knew I needed fluids.  But while waiting for my infusion nurse to get started, Dr. Malhotra made a rare infusion room appearance to inform me my white counts had dropped from 2.5, all the way down to 0.9 in a short 30 hours, making me officially neutropenic.

Translation:  He wanted me in the hospital STAT.

REALLY!  Yes I felt very bad.  My stomach had been in knots most of the day.  My diarrhea had for the most part been ignoring my Imodium caplets.

And as it turns-out, I was dehydrated.  Very dehydrated!

How do I know that?  I have the scars from a half dozen failed IV attempts to prove it.

Remember the article I wrote a while back in the Myeloma Beacon, filled with tips for ways to help your tech get a good IV started:

Pat’s Place: Tips For Infusion Days

I guess the two nurses hadn’t read the article.

It tool the nurse in the Florida Cancer Institute infusion room two tries to get my IV started.

But that’s nothing!  My very nice and attentive nures, Teri at the hospital took four tries and then took a time out.  I didn’t request someone else–although she offered.  No, she was very nice and I was worried that she was loosing her confidence.

So she took my advice and we used a hot compress on my opposite hand.  I also asked for a smaller needle.

Worked like a charm!

But I’m getting ahead of myself.  Back to the dehydration…

A small bag of fluids and electrolytes and I instantly felt a lot better.  And it’s a good thing I got that magic pick-me-up before I headed a half mile down the road to Oak Hill Hospital, because even with written admission orders, it took us over two hours to be admitted!

Considering Dr. Malhotra is associated with the hospital, one would think his written order would do the trick.

Turns-out I needed a private room, due to the neutropenea.  So they needed to clean the room.

Come on!  We sat in the bizarre emergency waiting room lobby from 4 PM until almost 6:30.  Really?  If I had felt as poorly as I did earlier in the day…

Fortunately, my nurse sister-in-law, Mary, drove up to help lift our spirits.  It was nice to see her–and to hear horror stories which probably made the “long wait hall of fame,” including one dialysis patient their clinic sent over to a nearby hospital.  The hospital “lost her” before she could even check-in.  A staffer found her 12 hours later, curled-up and asleep on an emergency room gurney.  And I only had to wait two and a half hours!

I will post a follow-up report on my hospital stay this evening.  For now, I’m feeling a lot better.  I was able to eat breakfast and I don’t seem any worse for wear following two intense doses of IV antibiotics.

Stay tuned!  Feel good and keep smiling–than God I am this morning!  Pat

In addition to the myeloma support groups I speak to across the country, I attend two local groups here in Florida.

The Nature Coast Multiple Myeloma Support Group, and a smaller, Leukemia & Lymphoma Society (LLS) group.

Wednesday night I should have stayed home.  But I felt it is important for me to participate–and like I said yesterday–I’m stubborn.  So I dragged myself to the LLS monthly meeting.

Tampa area LLS coordinator, Lourdes Arvello does a great job setting their group up.  She handles five counties with no help.  She’s a one woman shop.

Wednesday the topic at hand was how to improve the group.  We may switch locations, for example.  They are also planning to offer food, donated by local businesses.

But the way I look at it, the LLS group is more for emotional support and the IMF myeloma group is more of an informational type group.

This is most likely because of the wider variety of cancers represented in the LLS group.  Last night there were two lymphoma survivors there (along with their wives) and three myeloma patients there, too.  I’m not sure why there weren’t any folks with leukemia…

The meeting lasted over two hours.  By the time 8 PM rolled-around, I felt really, really bad–not realizing I had a fever of over 102–not a good thing for a recent stem cell transplant recipient.

I was tired and hot.  Everyone else in the group is what Lourdes referred to as “post acute,” meaning their conditions were relatively stable.

But in a fever-induced stupor, I shared how I felt now that I had fewer anti-myeloma options.

I broke-down.  It was nice having a group I felt close enough to that I could open-up.

Lourdes kindly remained after the meeting to help “talk me down.”  She made the point that all I ever seem to do is try and help other people.  That like a caregiver, I need to step-away once and a while to help get my head straight.

Many of my readers have implied the same thing.  Maybe it’s time I listened.

I’m still running a fever.  May be time to get some physical help, too.

Feel good and keep smiling!  Pat

Well, it’s now 3 PM.  I just received a call from a reader, wondering if I’m OK.  I love that!

Unfortunately, I’m not OK.  Two weeks ago I spent close to a week recovering from the worst cold I’ve experienced in a decade.  The title of an article I wrote about the experience said it all:

Medical Update:  I want my old immune system back!

Seven months after my auto stem cell transplant, It’s easy to forget that my new immune system is still developing–and I’m vulnerable to all kind of “bugs.”

Yesterday was Velcade day.  My blood counts are a bit low, but pretty good considering I have been on full dose RVD for three months.

So even though I felt bad all day yesterday, I still took my 25 mg Revlimid, too.

Probably not a great idea when I’m being hammered by diarrhea and a stomach that feels like it’s tied-up in knots.  I did skip the dex.  I’ll take that as soon as I start to feel better later this week.

I’m so stubborn!  I refuse to let a a headache and lower GI issues slow me down.  So off I went to a LLS support group meeting, feeling pretty lousy.

After two hours–and several rushed trips to the rest room–I could barely keep my eyes open.

The group is small and intimate.  Good people–and we really care about each other.

I’m going to write about my support group experience tomorrow.   I felt so bad I broke down and cried as I shared how I felt vulnerable and fearful about my uncertain future.

What I didn’t realize at the time was I was I had a fever of between 102 and 103.

My fever is still hanging around, but after sleeping most of the day, I am starting to feel better.  I called my medical oncologist, Dr. Malhotra, and he prescribed cipro (ciprofloxacin), which I believe is standard in cases like this.

If this would have happened a few months back, I would be in he hospital.  But now I’m in a “grey area.”  Since my temperature hasn’t continued to climb–and Ive been able to get my diarrhea under control–I’m thinking I just need to ride this out.

Like my serious cold,I haven’t had a temperature this high for more than a decade.  As a former teacher, I had built-up quite a tough immune system.

But that was then and this is now.  This feels a lot like I did about six weeks post-SCT.  Oh the memories!  Feeling so bad I could barely sit-up and write.

Time to crash.  Hopefully I will feel a bit better tomorrow.  Wish me luck!  All I know is I want to stay out of the hospital in the worst way.  After all, that’s how you really get sick!

Feel good and keep smiling!  Pat

Marizomib May Be Effective In Relapsed / Refractory Multiple Myeloma (ASH 2011)

Hopefully, each of these three new agents will help a number of patients who have become refractory to Velcade someday soon.

Feel good and keep smiling!  Pat

Good Morning!  Let’s get right to Danny Parker’s column–installment number five in his series about multiple myeloma and nutrition:

Diet and Multiple Myeloma (Part 5): Eating to Starve Cancer

Ever wondered how Revlimid works? Lenalidomide is a powerful anti-angiogenic agent.

And just what is that?

Put simply, angiogenesis is the process where new blood vessels grow from existing ones. While this process if vital in everything from repairing damaged tissues after you suffer a cut to growing a new human being in a mother’s womb, it is also fundamental in the transition in tumors from a dormant state to a malignant one.

Recently, a study performed for the American Association for Cancer Research on mice fed several types of diets, reinforces some of the findings from the earlier study we covered of the 179 Connecticut women who developed myeloma. It suggests mechanisms explaining how sugars and simple carbohydrates are bad for myeloma and protein intake is good. The study found that feeding the mice a high-protein, low-carbohydrate diet (similar to the South Beach Diet) reduced tumor growth rates– a finding they believe extends to human beings. “This shows that something as simple as a change in diet can have an impact on cancer risk,” reported lead researcher, Dr. Gerald Krystal, a distinguished scientist at the British Columbia Cancer Research Centre.            

http://www.aacr.org/home/public–media/aacr-in-the-news.aspx?d=2396

What was the attributed reason for the success of the low carbohydrate diet? You guessed it: angiogenesis. From the above study:

“… tumor cells, unlike normal cells, need significantly more glucose to grow and thrive. Restricting carbohydrate intake can significantly limit blood glucose and insulin, a hormone that has been shown in many independent studies to promote tumor growth in both humans and mice.”

The angiogenesis model also helps to explain how carbohydrate and excess sugar consumption in the Connecticut women was somewhat associated with elevated myeloma risk. The rapidly dividing cancer cells need an unusual amount of sugar for cell division, partly to grow the tangled web of fine blood vessels to supply the tumor with nutrients.

Moreover, beyond the problems with sugar and angiogenesis, we have the other challenge: diabetes. Most of us have, or will, take Dexamethasone (Dex) as part of our chemotherapy regimen against myeloma. Dex can substantially raise our blood glucose levels, particularly when taken with a sugar rich diet. High fructose corn syrup is particularly adverse in this regard as it reduces glycemic response and does not suppress hunger. Not only is elevated blood glucose temporarily bad, this combination places us a greater risk of developing Type II diabetes. So, sugar on Dex days is a clear no-no. In general, it is useful to choose foods with a low glycemic index, emphasizing whole grains and less processed foods.

There is a lot more to this. I like TED talks and I’d like to recommend you watch this inspiring presentation given by Dr. William Li.

He mentions lenalidomide (Revlimid) and myeloma as well as how the whole process of anti-angiogenesis may revolutionize cancer treatments.

http://www.ted.com/talks/william_li.html

Eating to starve cancer? Wouldn’t that be great? And look at all the other anti-angiogenic substances in the pantry. Some might help. Along with the blog, I include Dr. Li’s often requested slide from the presentation on anti-angiogenic foods.  You’ll note a lot of foods we’ve have already been emphasizing:

• Blueberries
• Turmeric
• Raspberries
• Grapes
• Apples
• Kale and Bok Choy
• Cooked Tomatoes
• Red Wine

Dr. Li is the medical director of the Angiogenesis Foundation:

http://www.angio.org/

According to Li, most cancers start as tiny clusters of malignant cells that remain dormant until they recruit new vessels to deliver oxygen and nutrients. Yet, after angiogenesis builds up steam, a cancer can expand like a wildfire—dividing 16,000 times in just two weeks.

Li also has a lot of other practical hints: dunking your tea bag to release more of the cancer- fighting nutrients, cooking tomatoes in olive oil to potentiate their advantages and chewing your greens well to release the nutrients. Li strongly endorses fermented soybean products such as miso (seven times the concentration of helpful compounds) and broccoli sprouts. He suggests trying to add one anti-angiogenic food to each meal.

I did find Dr. Li’s final talking point in the TED presentation particularly intriguing.

Here, he speaks of the importance of early intervention with diet before cancer takes hold. However, I wonder if this also might apply to myeloma patients in remission, nearly complete response or with smoldering myeloma.

Could anti-cancer foods (and limiting pro-angiogenic foods such as sugars and carbohydrates) make a bigger difference when the disease is not well established, or has been hammered down by a drug assault?

I think that would be in line with Dr. Li’s thinking. While, we don’t know his opinion, in a conversation in Atlantic Magazine, last March, Li was asked what was the big takeaway point he wanted everyone to hear relative to his work:

“Understanding that food is the chemotherapy we take three times per day is a game changer. We are learning that Mother Nature has imbued many foods–fruits, vegetables, herbs, seafoods, tea, coffee, even chocolate–with natural substances that can cut off the blood vessels that feed cancer and other diseases. Eating to starve cancer will pull the rug from under the cancer epidemic, and in a way that puts control in the hands of consumers, not doctors.”

While this may be a bit optimistic for those of us already with myeloma, putting some of these recommendations into action might help. Mindful of what Dr. Li suggests, let’s eat to be well and healthy.

Thanks, Danny!  I just want to add that I don’t edit Danny’s work.  We should all thank him for spending the time to organize his thoughts to help us all eat better and hopefully live longer!

Feel good and keep smiling!  Pat

Let me share an email I received from company spokesperson, Peter Schrager, along with the official press release/announcement:

Pat,

Hope all is well.

Today, Millennium: The Takeda Oncology Company announced that the FDA has approved subcutaneous administration of VELCADE® across all approved indications. Ordinarily, an sNDA approval such as this would be an incremental advance, but the FDA’s decision now provides oncologists with the ability to deliver the proven survival power of VELCADE with greater tolerability, particularly reduced rates of peripheral neuropathy (PN); for patients with multiple myeloma (MM).

Subcutaneous administration allows a broader group of patients—including both first-line, treatment naïve patients as well those who are on “maintenance therapy,” to receive the potential benefits of VELCADE. A pioneer in MM treatment, Millennium continues to innovate and expand VELCADE’s leadership position as well as grow its oncology portfolio and pipeline. Millennium’s recent purchase of Intellikine and the advancement of two of its pipeline therapies into Phase 3 testing—MLN8237 and MLN9708—means the company’s momentum in cancer therapies will continue to accelerate.

Please let me know if you would like to speak with a company spokesperson or an external expert to learn more about this milestone for Millennium and the MM community. In the meantime, following is the Millennium press release for your review, if you wish to share with your readers. Thanks for your consideration.

Best, Peter Schrager

On behalf of Millennium

FDA Approves Subcutaneous Administration of VELCADE^® In All Approved Indications

– Study met primary efficacy endpoint of non-inferiority between subcutaneous and intravenous administration –

– Study results also indicated overall similar safety profile with differences in incidence of peripheral neuropathy –

CAMBRIDGE, Mass., January 23, 2012–Millennium: The Takeda Oncology Company  with its parent company Takeda Pharmaceutical Company Limited (TSE:4502) today announced that the U.S. Food and Drug Administration (FDA) has approved a supplemental new drug application (sNDA) for VELCADE^®(bortezomib), which updates the label to include the subcutaneous method of administration in all approved indications: multiple myeloma and mantle cell lymphoma after at least one prior therapy.

The approval was based on results from a randomized, phase 3, open-label, international, non-inferiority trial conducted in 222 bortezomib-naïve patients with relapsed multiple myeloma (MM). The primary (non-inferiority) objective of the trial was to demonstrate that single agent subcutaneous VELCADE retained at least 60 percent of the overall response rate (ORR) after 4 cycles relative to single agent intravenous VELCADE. Patients in both arms who did not obtain an optimal response (less than complete response (CR)) to therapy with VELCADE alone after 4 cycles were allowed to receive 20 mg of oral dexamethasone daily on the day of and after VELCADE administration. The secondary endpoints of the study included safety and tolerability, ORR and CR rate after 8 cycles, time to progression (TTP), progression free survival (PFS), and one-year overall survival (OS) of the two routes of administration.

Subcutaneous Administration

The pivotal study, published in the Lancet Oncology in May 2011, met its primary efficacy endpoint. Patients receiving VELCADE subcutaneously achieved a 4-cycle ORR of 43 percent and CR rate of 7 percent, while patients receiving VELCADE intravenously achieved an ORR of 42 percent and a CR rate of 8 percent.  The overall safety profile was similar between the two arms. However, differences were observed in the incidence of peripheral neuropathy (PN). In the subcutaneous arm of the trial, 6 percent of patients experienced PN of grade 3 or higher, compared with 16 percent in the intravenous arm. In the subcutaneous arm, 38 percent of patients experienced PN of all grades, compared with 53 percent of patients in the intravenous arm.

“Subcutaneous VELCADE is yet another advance in the management of patients with multiple myeloma or relapsed mantle cell lymphoma,” said Karen Ferrante, M.D., Chief Medical Officer, Millennium. “The consistency in efficacy findings, and observed differences in peripheral neuropathy, allow physicians to tailor VELCADE treatment for their patients.”

“Considering this new subcutaneous route of administration for VELCADE is important for our patients, including those with poor vein access and those with pre-existing peripheral neuropathy or a high risk of developing peripheral neuropathy,” said Noopur Raje, M.D. director of the Center for Multiple Myeloma at Massachusetts General Hospital Cancer Center. “It’s important to have a range of treatment options to provide the best possible care to each individual patient.”

Additional study results at 8 cycles of treatment for subcutaneous and intravenous VELCADE, respectively, included:

• ORR 53 percent and 51 percent
• CR rate 11 percent and 12 percent

Additional study results at 11.8-month median follow-up for subcutaneous and intravenous VELCADE, respectively, included:

• TTP 10.4 months and 9.4 months
• PFS 10.2 months and 8.0 months
• OS at 1 year 72.6 percent and 76.7 percent

Grade 3 and above adverse events with differences greater than 5 percent between routes of administration were:

• Peripheral neuropathy, subcutaneous 6 percent, intravenous 16 percent
• Thrombocytopenia, subcutaneous 13 percent, intravenous 19 percent
• Neuralgia, subcutaneous 3 percent, intravenous 9 percent

New Contraindication for Intrathecal Administration

The updated label also includes a contraindication for intrathecal administration as fatal events have occurred with the inadvertent intrathecal administration of VELCADE.  VELCADE is for intravenous or subcutaneous use only.

About VELCADE
VELCADE is co-developed by Millennium and Janssen Pharmaceutical Companies. Millennium is responsible for commercialization of VELCADE in the U.S.; Janssen Pharmaceutical Companies are responsible for commercialization in Europe and the rest of the world. Takeda Pharmaceutical Company Limited and Janssen Pharmaceutical K.K. co-promote VELCADE in Japan. VELCADE is approved in more than 90 countries and has been used to treat more than 300,000 patients worldwide.

There you have it.  I have been receiving my Velcade infusions this way for months.  And yes, the associated peripheral neuropathy does seem better than Velcade by IV–at least for me so far.

Great work by our friends at Millennium pushing this through so quickly.

Feel good and keep smiling!  Pat

I wanted to start out the new week by sharing some updates I received by email this weekend.

First, I hope you take the time to read yesterday’s post.  The article dispels a number of myths associated with median life expectancy statistics.

One of the first questions anyone asks their physician after learning they have an incurable form of cancer is “Doctor, how long do I have?”

It isn’t a very satisfactory answer, but for newly diagnosed multiple myeloma patients, the truth is no one knows.

There are too many variables;  from when that patient’s myeloma actually became active, to how old they are at the time of diagnosis, genetic factors and their overall health.  Toss in the incalculable wildcard of how the dozens of  experimental anti-myeloma therapies in the research pipeline will ultimately shape the new myeloma survival landscape, and any answer more specific than “no one knows” becomes disingenuous.

For many, not only are current median life expectancy numbers irrelevant, they can also be limiting and misleading.

I hope you find yesterday’s post liberating and hopeful.  Let me know what you think.

A week ago I wrote about a mysterious new Australian anti-myeloma compound:

Might mysterious blend of Australian sea creatures really work against multiple myeloma?

To follow-up, I had the opportunity to exchange a number of emails with the inventor of TBL-12, Samual Grant:

We now we have 2 Studies, one at Mount Sinai (which has been going for over 30 months) and one at NYU…

Best regards,  Sam

After sharing a reader’s suggestion that in-Vitro testing of TBL-12 in combination with Velcade and/or Revlimid might be a relatively affordable way to test the new compound’s potential effectiveness, Mr. Grant responded this way:

Pat,

One of the things you mentioned was that an in Vitro study with Velcade and Revlimid would be useful, and we agree on that. To that end, we have already conducted an in Vitro Study at NYU on TBL-12/Velcade and I will send that you on a separate e-mail for your thoughts. Revlimid and the other Drugs will be done, but a little later down the track.

In the in Vitro Study, we found that not only did we virtually eliminate the side effects if we reduced the Dose Rate of Velcade, but we enhanced the performance of the Drug.

We believe that reducing side effects could be a major benefit (even though we are showing Cancer Cell Killing ability with TBL-12) as most Oncologists will want to stick with Major Drugs, therefore Combination Therapies with TBL-12 and Conventional Drugs would be the best of both worlds, especially in the early stages. If we can reduce the Side Effects and increase the Benifits of the Drugs, we could see some incredible results.

We are a small company, but we believe in our product, which is why we have chosen to do ‘Real’ Scientific Research on TBL-12. Any help and any suggestions are much appreciated, so any thoughts you have will be genuinely considered.

I have been involved in TBL-12 for 30 years. My Father was given six months to live in 1962; he passed away in 2009, so I know it works, and I believe if this is done right, TBL-12 can help may people. We have many people who rely on this product, and we owe it to them to do it properly and have it available.

I want to thank Mr. Grant for his openness and “outside the box” thinking.

I have already lined-up an interview with Dr. Jagannath, the principle investigator of TBL-12 at Mount Sinai in New York City.   I will meet with him when I attend the large oncology nurses convention in New Orleans later this spring.

Moving on to another ongoing topic, our guest nutritional columnist, Danny Parker, sent me this follow-up email recently, featuring a great smoothie recipe for those of you who battle therapy induced constipation:

Pat,

As this is the first time with the full package of supplements and Velcade, watch you body and reactions carefully.

I have big constipation with Velcade, but maybe you don’t. I had to have laxative smoothies on Velcade days and the day after.  Might go for something like that tomorrow and or the next day for breakfast to keep the belly happy.

DP’s Smoothies

Into the blender:
Two cups of soy or almond milk or regular milk
1 cored, but unpeeled apple
2 ripe bananas
1 cup of frozen blueberries and/or raspberries
Scoop of banana-orange flavored Fruitein protein powder*
Frozen or fresh papaya chunks (or frozen mango or peaches)
(Scoop of Miralax as needed)
Optional: scoop of yogurt

Serves two. Turn on the blender until thoroughly mixed. Serve with a straw. Better than any commercial smoothie and so damned healthy (apple, blueberries and papaya have helpful properties against MM), you’ll smile. Yummy!

* You likely don’t have that, but this is pretty good. Still, it is fine without it. Yogurt helps add richness.

http://www.amazon.com/Natures-Plus-Fruitein-Banana-Orange/dp/B0001VU8B4/ref=pd_sim_hpc_8

I’ll be thinking about you.
Danny

Constipation is an ongoing struggle for me.  Taking a lot of oxycodone for my bone pain and peripheral neuropathy doesn’t help.

But I am able to get by with a very high fiber diet–and by adding a lot of magnesium to my daily handful of supplements.

I will be running the next installment of Danny’s diet and myeloma series tomorrow.

Until then, feel good and keep smiling!  Pat

She had been searching for help to find a therapy that might work for her brother with multiple myeloma.

Unfortunately, her brother died before he could even start therapy.

Last year, a member of our support group here in Florida recently passed away after being diagnosed a short six months earlier.

Two of many examples which help illustrate why  median life expectancy statistics for multiple myeloma patients are unreliable and misleading.

Let me explain.

I’m another example.   At age 48, I was a real estate agent working in Wisconsin.  While completing a contract called an offer to purchase, my buyers asked why my hands were shaking.

I had never thought about it, but they were right.   It became more and more difficult for me to “fill in the blanks” on contracts as the years went on.

Four years later at the age of 51, I was diagnosed with multiple myeloma.  Based on the extensive bone damage that my MRI and other tests revealed, my specialist at Mayo Clinic speculated that it had started a number of years earlier.

“How many years earlier?” I asked.  “It’s impossible to tell.” he responded.

I then described how my hands–and handwriting–had become so unsteady as early as four years ago.  Could that have marked the start of my myeloma?   “Very possibly.” he replied.

Now let’s switch gears.  At every support group I visit around the country, one or more survivors describe how they were diagnosed completely by accident.  Completely without symptoms, these folks describe how their doctor noticed how something “wasn’t quite right.” with their blood work, which was drawn for another reason–or as a result of a routine physical.

So explain to me how any multiple myeloma patient can use median life expectancy statistics to help gauge how long he or she may live?

We are talking about a variation of up to five years–or more–between when each of these patient’s myeloma started.

Yet everyone’s stats are tossed randomly in together.

So if my myeloma did in fact start four or more years before my diagnosis, and I have now lived almost five years longer, does this mean I have already lived almost ten years with bone marrow cancer that, on average, is supposed to kill me in half that time?

THIS IS CRAZY!

And I haven’t even addressed how patients who are diagnosed in their 80′s are tossed-in together with patients who are diagnosed at age 42…

I understand that “median life expectancy” means one half of patients live longer than the median, and one half live less.

But longer or less than what?

I hope you can see where I am going with this by now.

WE ARE NOT STATISTICS!

No one can tell us with any certainty how long we are going to live–whether we have multiple myeloma or not.

Accepting our mortality–and then learning to live the cliche’ “one day at a time”–is the key to getting our life back!

Statistics are just guidelines.  They point to trends.

I’m now 55 years old.  Yes, based on statistics, it is unlikely that I will live to see my 65th birthday.  After all, that would mean I had managed to live with multiple myeloma for almost 20 years.

Unlikely, but not impossible. 

But why worry about something I can’t control?  I feel pretty darn good today–despite still being on RVD chemo mid-cycle.

I can still write, take a walk in the warm Florida sun with my wife and our “Island Dog” Finnegan.

And that’s good enough for me!

So statistics be damned!  Try to make the best out of each day.

And don’t forget to feel good and keep smiling!  Pat

Pomalidomide Elicits Responses When Other Myeloma Regimens Fail

By P. Wendling

SAN DIEGO – The potent, next-generation immunomodulatory inhibitor pomalidomide works in at least one-third of patients with relapsed and/or refractory multiple myeloma when nothing else does, a series of studies shows…

…The heavily pretreated 221-patient cohort had received a median of five prior regimens… 34% of patients given pomalidomide plus dexamethasone achieved at least a partial response.

Do you know how I keep harping about how important it is not to become refractory to both Revlimid andVelcade?  Better to mix and match and add different drugs to a variety of combo therapies…

Well here’s why:

Among patients refractory to lenalidomide and bortezomib, the use of pomalidomide and dexamethasone increased the median time to progression from 2.0 months with pomalidomide alone to 3.9 months, and median overall survival from 12.7 months to 13.7 months.

OUCH!  One extra month?  I believe the key is to use drugs like pomalidomide sooner rather than later–and you can see why…

CLICK HERE to access the article.

All the news isn’t bad.  I have a friend who is refractory to just about everything, yet pomalidomide has worked like a charm for him for the past six months.

REMEMBER:  YOU/WE ARE NOT STATISTICS!

Also remember that very early studies show pomalidomide works wonderfully when combined with a number of other different novel therapies.

But if you are relying on the stats from San Diego alone, it can look pretty grim if you are a refractory, heavily pre-treated patient.

Tomorrow I will post a commentary about why there is hope–even for such heavily pre-treated patients–along with the rest of us!

So hang in their, myeloma friends and neighbors!  Remember, one day at a time, right?  Feel good and keep smiling!  Pat