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.


  1. Makes me glad I have received both flu shots. And a pneunomia shot. The nurse that gave me my H1N1 shot, made the comment, "you don't know how lucky you are that you can get this shot(since here you have to be in a high risk group to get one). They are also saying they expect the H1N1 flu to be strong thru spring, as there are many carriers that don't express symtoms.

  2. Nick,
    It won't surprise you to hear from me that there is another point of view. I will try to be diplomatic and brief. I've had both the "treat it like a chronic disease" and "kill it" approach. Yes, I didn't go to Arkansas until after I'd had 4 years of treatment. However, after 4 years my bone marrow was, in BB's words, "in very good shape," when he started treating me (plasma cells 10%, IGGs 2500, no chromosome abnormalities). It's now a mess(plasma 75%,IGGs 3700, multiple abnormalities)and whether it will ever function normally again, no one knows. I cast no blame nor do I have sour grapes. I did my research, ignored my local doctor's warnings and went for the cure. BB expressed great confidence. My MM went crazy just when I started treatment. I now know that great caution is in order when discussing the various treatments available. The truth is that no one does know and if anyone had the answer, they would all be doing it. There are many good reasons Mayo, MD Anderson, and most practicing oncologists/hematologists do not agree with the "kill it" approach. I thought it was just a matter of being tough enough to withstand it--if you can take it, you can get cured. Not so. It doesn't work for everybody and if it doesn't, you may have done more harm than good (and no one knows going in whether its going to work for you). The treatment decision is complex. I have met and know of many people with MM who have not had the "kill it" treatment and continue to live full active lives and who will also not die from the disease. And despite my setbacks I am confident I will be one of them. I suspect I've been less than PC here, but couldn't restrain myself. I'm off to MD Anderson next week to hear what they have to say about all this. I'll keep you posted. Best to you and yours.

  3. Dan -

    Thanks for the comments. I agree in large part with what you've written, of course, and I always think of you and how much you've endured and the sad truth that it appears Arkansas didn't do a hell of a lot of good for you and left you marrow pretty mangled.

    I think it was your darling wife who first phrased it to me: BB's approach is great for people that haven't been treated before, but for people that have, he's guessing the same as anybody else. And I agree with this. If the disease has built up drug resistance, I would agree that the "kill it" approach loses a lot of its efficacy, and I would not counsel those who have undergone extensive treatment before to go for Total Therapy. At least not at this point.

    My comments for the newly diagnosed, young, otherwise healthy patient, though, remain unchanged. And as JD, with whom I had dinner the other night, fits this bill, I want to encourage him to be aggressive. You can only be aggressive with it once -- and it follows from the previous paragraph that if you aren't fortunate enough to be in a position to attempt to kill it the first time, it's probably not a great idea to try to do it later.

    We are thinking of you and praying for extremely positive results from your upcoming visit to Houston!!!!!


  4. his story is heartbreaking. he's only 2 years younger than I am and my mom is a year younger than his dad.
    makes me want to squeeze her a little tighter before bed tonight.

  5. Well you know Hamada's story Nick - he went for it too, but he had no choice. Do or die! We are now at over three years six months, so for us, yes the right thing and this time now is the best in all the past months for H. Also, you know what, if he makes it through the winter flu free, the biggest risk of all as we read here, he will try once again with more chemo in the new year. A fighter yes, but there really is no other way for some. All best wishes to you Nick.

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