Friday, October 23, 2009

Sad comments from a new friend, and more reflections on control versus eradicate

I received an email yesterday and I wanted to share some of it as it affected me rather profoundly. I've edited it as appropriate to preserve the Myeloma content and not the rest of it.

I am so sorry to hear of what you have undergone in the past year. My dad has battled Multiple Myeloma for almost 5 years now. Unfortunately, he passed away this past Tuesday morning after being infected with the flu, which bridged over into pneumonia. He was only 51 years old. I’m 25. Your experiences sound very similar from all that I have read.

My dad always made it a point to stay out of public areas during the flu season. This year, as his health waned, we decided it would be good for him to get out of the house. But I guess something got past his immune system. As you know, quality of life is a complex topic. Should you stay in and not take any chances, yet not fully living? Or should you go out and live your life to the fullest, yet still taking health risks?

Here’s what I found: when my dad’s numbers were good, he was able to live a relatively normal life. We went out to eat. We went to concerts. We even made a CD together. He and I are both musicians and I’m so happy we were able to do what we was the only time my dad was truly pain-free. I told my dad your story about a month ago. I told him about the stem-cell transplants and such. He never underwent the procedure, but when I told him that it had seemed to work for you he said to me, “I’ll do anything it takes. I want to survive.”

One more thing, Dr. JB [Nick's note: the same JB that I've written about here as the anti-transplant guy] is one of the leading doctors in Myeloma and Bone Cancer Research...He was very comforting to my dad and if you need any more doctors’ support, he may be of great comfort to you as well.

I was so sad to hear of this young man's story, and his father's story. And I am moved to comment, perhaps more strongly than I have before, on the different approaches to battling this disease.

I have been corresponding of late with a terrific man, Pat Killingsworth, who has taken a different approach to his Myeloma in terms of treatment, but who has the same approach in terms of sharing his experiences in the hopes of helping others. His blog can be found at, for those who are interested.

Now as I said...Pat's approach is quite different than mine. He described it to me as "stick and to fight another day" and put off serious treatment such as a stem cell transplant until such time as his current remission (created from radiation and thal/dex, I believe) lapses. Pat's approach is very cautious, where mine has been to charge ahead full steam. In full disclosure, I remember when I was getting a blood transfusion a few months ago I happened upon Pat's blog that day -- before I knew him -- and it coincidentally had all the dangers of blood transfusions listed! :) I remember writing that one can go crazy from thinking through all the many things that COULD happen from these other treatments. But at the time, the one certainty was that I was severely anemic and felt terrible, and getting a unit or two of blood would make a big difference.

Pat notes in his review of Total Therapy on his blog from a couple of weeks ago that Myeloma treatment is guesswork -- I'm not sure I agree 100% with that, but I know where he is coming from. But I DO know that in many, many cases, the decision to "live with the disease" is tantamount to the decision to "die from the disease."

JB, he of the anti-transplant bent, obviously treated the man whose son wrote to me. A man who at age 46 was diagnosed, who never underwent a transplant, and who five years later is dead. From the flu. A man who was, if I may infer from the letter, unable to live life to the fullest except in snatches here or there when his numbers were good.

JD -- the man with whom I had dinner the other night -- if you are reading this, please carefully consider that letter. Consider what happens if you don't take the aggressive approach. Is Total Therapy right for everybody? No. 15-20% of newly diagnosed people do not respond well to it. If you have been treated before, you won't benefit as much from it. If you are old and have other illnesses or are in poor health, it can be overwhelming.

But for a young, otherwise healthy, newly diagnosed patient, I truly believe: you stand the best chance of being cured from it and resuming a normal life than from any other treatment alternative available at this time.

Take the fight to Myeloma. Kill it before it kills you.