Returning to the mechanics of transplant, Kevin gives some details of the six-month milestone, but is unable to refrain from a bit of hopeful philosophy.
Kevin Berry is an 13-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.
In keeping with the nautical theme from my three-month post transplant report, Crossing the 90th Meridian
, I considered titling this post “Crossing The International Date Line,” but fortunately, sanity prevailed. The idea, though, that getting to the six-month milestone is an accomplishment worthy of a heavy dark line on the globe, seems (at least in Kevin Land) to make a twisted sort of sense.
For allogeneic stem cell transplant patients, the three-month point means the chance of acute graft-versus-host disease lessens dramatically. Many side effects and nagging little annoyances like skin rashes lessen dramatically. That makes it a pretty much 100 percent-positive event. The 180-day, six-month point is more of a great news/worrying news point in time.
Mechanically, at +180, patients undergo a series of tests to make sure your body is recovering and your cancer is (still!) gone. In two days I had a bone scan, (dubbed a “DEXA”); a CT scan; another bone marrow biopsy (no. 4 this year; pre-transplant, 30, 90 and 180 days); a pulmonary function test; of course lots of blood work; a doctor visit; and five vaccinations. It was a relief getting the shots, since I’ve felt pretty vulnerable without immunity to childhood diseases. It was a rather grueling two days, but so far, all results are very positive, I’m completely cancer free and in great overall health. So many of these tests have become routine that I have the rhythm and little tricks down. An example is that if you ask, they may be able to do your labs when you get stuck for your anesthesia for your biopsy, rather than getting poked again in a few hours when you are scheduled to go into the lab for blood work. Minimizing the number of sticks in a day is pretty much a full-time job for us cancer patients!
The 'good news' part of the six-month milestone is that, besides starting to build immunity to diphtheria, polio, tetanus, whooping cough, pneumonia, hepatitis and HiB. Plus (remember, Your Mileage May Vary depending on doctor, condition, and whether you remember to ask) some or many of the restrictions on diet and activity might be eased. I’m doing so well, the doc actually took off more restrictions than I’m comfortable with! I’m keeping up many of the dietary and sanitation practices I’ve learned until further down the road, or (keeping with my opening theme) further around the globe. I was blessed with a very quick recovery, so have been back to work for several months. More typically, the six-month point is when folks get back to work, school and regular life.
The worrying part of hitting 180 days is that the window for chronic graft-versus-host disease opens. A significant fraction of patients have some symptoms. Depending on your treatment regime, from 25 to 50 percent of people have some problems. An unfortunate fraction of these folks have serious complications. That means, just when we’re relaxing and getting back to normal, we have to stay just as paranoid/hypochondriac as we’ve been living with. Minor infections have to be hammered flat immediately, lest they blossom into life threatening illnesses. Minor stomach trouble has to be evaluated as a possible graft-versus-host disease indicator. For the next 18 months, normal means keeping 110 percent on top of your health.
Of course, the big question is: Am I cured? Depending on which type of cancer, how well your transplant went and quite probably the Dow Jones Industrial Average, the likelihood an allo stem cell transplant provides a durable cure varies. For me, with mantle cell lymphoma, with a history of 10 years of 13 different treatments, given my age and health, and considering the stock market conditions (I hope you realize I’m kidding about the Dow!); I’m given a 90 percent chance of a long term cure. But (there’s always
a but!) my biggest danger period is the first two to three years. Let The Worrying Continue Unabated (LTWCU).
For me, though, my brain just refuses to go to the LTWCU state. I recovered in record-setting fashion. Back to work part-time in three and a half months; full-time before six months; running two miles and swimming 200 meters; doing 8-16 flights of stairs a day; and just feeling amazingly well means I have decided, in a rather metaphysical manner, that I’m just done with it. After years of calculating very poor odds in my head, I’m happy with 90 percent as a number.
So, gentle readers, I hope that those of you undergoing transplants now will be encouraged that not too many months out, a big chunk of your discomfort might be over, your life can be settling down, and you might be freed from the spectre that’s been haunting you since that horrible, awful day of your diagnosis.
Besides the other wonderful blogs on CURE, I hope you'll visit my Taking Vienna
site. I also recommend T.J. and Jen Sharpe’s blog, Patient #1
. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource. I also encourage readers to visit the Be The Match
site to learn about registering as a potential stem cell donor.