Hope for a cure: Tom’s allo transplant journey (Part Three)
Deciding to undergo a risky and experimental therapy like an allegeneic (donor) stem cell transplant isn’t an easy decision for a multiple myeloma patient, their family and doctor to make. What were the factors that went into Tom’s decision to transplant later this month?
Let me let Tom explain in his own words:
“The allo transplant was suggested to me by my MM specialist. He had never indicated he was in favor of this treatment, but given the fact that we were going through treatments pretty fast and we could never get a solid remission he thought I should consider it.
The factors that went into my decision:
Treatments – Over the last five years I have been under constant treatment. There has never been a time that I was considered to be on maintenance. 25 mg of Rev for 5 years, 40 mg of dex for 5 years, peripheral neruopathy (although improved somewhat) bruising all over from the vidaza shots and the side effects associated with whatever else they had me on at the time.
Family – I have a lovely, supportive wife and two small children, ages five and three. Our three year old was born after I was diagnosed. But that’s another story…
Financial – I am a financial planner and luckily had taken my own advice. I have great health coverage and good disability policies. I just went on disability 4 months ago.
Health – As far as us MMers go, I am in pretty good health. Over the years I have developed fractures and lesions, always fighting the effects of chemo brain (I have really been impacted by that) and the fatigue associated with beating my body up with drugs for 5 years.
So after much though–and going back and forth–I decided to undergo a mini allo. The mini allo is being done as part of a clinical trial that uses Velcade immediately after transplant and for the first hundred days. (I believe you covered this in one of your posts) The idea is to use the Velcade to keep the multiple myeloma down while the new cells have time to graft.”
Why did Tom ultimately decide to transplant? He explained to me that, “As I looked ahead at the next five years, I didn’t see anything different. I believe I could survive the next five years, but at what cost? Another five years of fatigue and fighting constantly for the status quo?”
Tom acknowledges that being alive beats the alternative, but that over the years simply staying alive didn’t seem like it was enough anymore. When Tom and his wife, Whitney, decided to have their son in the middle treatment, Tom says:
“I told myself I would only do that (have another child) if I could be here long enough to get him to his teens. Then I realized being alive—and not being able to participate in his life when he got older—is not what I wanted, either. My daughter is five, and she is already noticing that dad has a hard time doing some of the things the other dads do.”
Tough stuff! Tom and his family have had to make a lot of difficult choices over the years. We’re so fortunate that he has agreed to share his transplant journey with us. Here’s more of what Tom had to say about his decision:
“From a health standpoint I’m never going to be stronger or younger. My thought was if I am going to use the ‘big guns,’ I’m better off doing it now, rather than waiting until I have other problems and use it as salvage.”
Tom says he knows the risks, and he’s “not foolish enough to be counting on this curing me.” He’s hoping the new Velcade trial will help prevent “too much chronic graph versus host disease (GVHD),” and that his new cells will “fight for me.”
Tom feels that, “If they (donor stem cells) do their job, perhaps I can dial back some of the treatments and get back to a more active life. And if it does end up curing me, then that’s a bonus!”
A bonus, indeed! Let’s wrap this up using Tom’s own words:
“Now that I have made this decision I feel a burst of energy. I’ve always been a fighter; on the ball field, in the office or even playing monopoly—you didn’t want to play me because I love to win. Over the last few years, I felt as though I was beaten and had no response. This transplant, although dangerous, gives me the feeling that I’m getting back into the fight with a tool that might actually help me win, or at least drastically tilt the odds.”
I love the way he signs all of his emails:
I’m inspired by so many facets of Tom’s story. We are all pulling for you, big guy!
Next week I will share some of the medical details leading up to his transplant. Feel good and keep smiling! Pat