Update: Allo transplant recipient, David from Florida
Yikes! Tom has faced such a tough road following his allogeneic (donor) stem cell transplant. Combine this with a mortality rate for myeloma patients that runs somewhere between ten and twenty percent–and a success rate that’s hard to predict–it’s understandable why a lot of doctors and patients shy away from the controversial procedure. Yet to be fair, some patients have a much easier time.
Last December I started a seven part series about a myeloma patient from Tampa, named David:
As with Tom’s story, if you type his tagline onto the long, black query bar in the upper right hand corner of the page, you can easily access the other six installments if you’re interested.
Unlike Tom, David’s experience was apparently a lot easier to manage. Here’s the first part of an update that David kindly penned for us earlier this week:
It is hard to believe that I was released from inpatient care almost four months ago, and from onsite housing for almost three months. I guess I put my multiple myeloma away for a while to focus on reconnecting with my family, and forgot about it for a long time. It has been the gentle prodding of friends like Pat that have prompted me out of hibernation.
On the day-to-day medical/ allo side-effect front, it has generally been a mixed bag. I cannot say, even with my most positive rose-colored glasses on, that I feel great. Yet, I have never really felt really sick or under any degree of peril.
The first month back, my body was still trying to adjust to the right combination of Tacrolimus (an immunosuppressant given for Graft Versus Host, or GVHD) and magnesium supplements. Too much Tacrolimus and my magnesium could drop so low as to endanger my coronary functioning. Too much magnesium and there is terrible diarrhea. After about six weeks, I think they found the right balance.
Fatigue remains an issue, but I think I need to take the blame for this. When I was inpatient and then at the nearby apartment, I did not have the kids, my list of chores or even a little business that I had to mess with while still on leave, so I was able to focus more on my health and exercise. I find that finding time to exercise and beat back the fatigue is hard. It sounds like the same excuse I used before getting cancer.
I have been very careful to avoid getting sick. Only now will I go to a supermarket without a mask, but never without sanitizer. I avoid fresh fruits and vegetables and try not to be around my children’s playmates (my kids are 5 and 3). I went to see my beloved Tampa Bay Lightning play their final regular season game, and was the only one of 20,000 people with a mask. (Except for the goalies, right David?) It did allow me to move through the crowd with a little extra room. We have all experienced that look; when people think you have a mask to prevent them from getting sick from you.
For the most part I have been successful staying out of harm’s way, other than suffering through a very bad cough and cold caused by the human metapneumovirus (the common cold with a very mean streak for those with suppressed immune systems and children). It took a few weeks and a super medication called Ribaviran to vanquish the beast. It was almost funny that it was easier to get Pomalyst and Revlimid from my insurance carrier (at thousands and thousands a month) than this medication that costs about $300 a month without insurance coverage).
In spite of some extra precautions, fatigue, nausea and other nuisance side effects, it is great being home and the memory of me being away from my children fading for them in direct proportion to the length of my new hair. My children no longer call me “Mr. Prickle Head”.
I’m so glad David is doing well! Honestly, I don’t know what to say about David’s liaise fare attitude about the side effects he’s lived with for the past six months. When I wrote my book, Stem Cell Transplants from a Patient’s Perspective, I shared a journal of my experience in the middle part of the book. Good or bad, I recorded how I felt–and dealt–with a host of side effects.
My biggest challenge was never ending nausea. That’s a real problem for 50% of auto/allo patients.
Listen, I admire David’s ability to compartmentalize unpleasant experiences. Some tolerate pain and discomfort more than others. Was my experience “tolerable?” In retrospect, I guess so.
But here’s the thing. Just as the day by day account of my transplant experience might discourage some readers, downplaying discomfort doesn’t help paint a realistic picture, either. So I called David. Using a hockey metaphor, has he really skated through his allo unscathed?
We had a wonderful conversation this morning. Yes, his transplant experience has been tough. But David has–and still is– focused on the big picture: extending his life and beating his cancer.
“I wanted my family to know I did everything I could,” he explained.
Several times David mentioned bad he felt for Tom and everything he’s had to go through. As we shared transplant “war stories,” I realized David’s experience wasn’t as rough as a number of other transplant survivors I’ve interviewed. His account reminded me that other allo recipients had made it successfully through to the other side; many myeloma free years later.
David asked me which way I was leaning now; modified auto in Iowa City or experimental allo in New York. I answered honestly, “I really don’t know.”
For him to have made a decision to undergo a preemptive allogeneic stem cell transplant was incredibly brave. David’s advice: head on up to New York City.
In the end, that told me all I needed to know about David’s allo experience. Despite ongoing discomfort and inconveniences–like chronic fatigue and always wearing a mask and long sleeves in muggy Tampa–David found the experience tolerable enough to recommend I do the same.
As he wisely said, “It’s risk versus reward,” adding, “Once you make a decision, don’t look back; no regrets.”
Another inspirational myeloma hero–and an awesome new friend.
But what about David’s myeloma? Did his auto/allo combination make it all go away? Tune in tomorrow to read what David and his doctors have to say about that.
Feel good and keep smiling! Pat