January 25

FINDING THE PONY: Dealing with the flu, a deleted chromosome

Jim Arnold

The plot thickens. I had my consultation with the oncologist who will oversee my stem cell transplant at Boston’s Dana-Farber Institute. Since Sheri was still sick, my friend Bob drove me down, and the doctor was happy to initiate a teleconference so Sheri could participate. Excellent.

First off, we talked about me as a candidate for the transplant. It turns out I am an outstanding candidate for the transplant. Odd thing about the transplant: All the health professionals I’ve talked to describe the process in words you don’t usually hear from them — “brutal,” “arduous,” and I think I heard at least one “horrible.” OK. But I’m a Mainer Lite, don’t forget. When something is going to be wicked hard, we call that a good starting point. Besides, the same professionals all say it’s completely worth it and can make a huge difference in remission time and quality of life.

Right. I’m in. When do we start?

Well, says the doctor, you have a rare and serious genetic disorder that affects your multiple myeloma in a big way that we need to talk about, My first thought was, “Of course I do.” My second thought was, “Roh roh.”

I might have missed part of what he said, but I did not miss “rare,” “serious” or “disorder.” Turns out I have chromosome deletion 17p. The doctor is fairly sure it was inherited from my parents.

There was a time in my life when I blamed anything and everything that went wrong in my life on my mother and father. Now that I’ve moved beyond all that crap, there’s no one to point a finger at to say, “You did this to me!” Nope. Poop happens and sometimes it happens to you. I do miss the occasional finger-point though.

As far as I can tell, the impact of this chromosome deletion in cases of multiple myeloma is that it generally cuts survival rates in half. Also, the stem-cell transplant will still be effective, but the rate of remission also will be reduced. I think part of the problem is that so few people have this chromosome deficiency and multiple myeloma, researchers are hard-pressed to find sufficient data.

But then, we got to the good bits. My DNA includes a broken chromosome that is going to cause us a lot of pain and very tough time. Fair enough. But my DNA also has a strong no-quit gene, that I think I also got from my mother. Sheri has the same, and I could tell the doctor made three.

The new treatment plan is being formulated now. First, what we have been doing has been so remarkably successful that we continue with most of that. We going to add a powerful intravenous chemo to the mix, along with the chemo pill I’ve been taking. There is still an impact to the transplant, and chances are very good that any remission will not last as long. However, it should last longer than if I didn’t have it done. Again, sign me up.

Some of the treatments and medicines I’ll be taking are relatively new. The Dana-Farber doctor said that all of the things we are trying and doing are, basically, to buy us time. New treatments are in various stages of development, and no one knows when/if a cure will be found.

As we were wrapping up, the doctor gave me a hug and said, “Jim ... multiple myeloma is incurable in January of 2014.” That, brothers and sisters, epitomizes the hope I feel as we head into the latest stage of our journey together.

(Continued on page 2)

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