Thursday the Myeloma Beacon ran my monthly column, Pat’s Place, Fourteen Months and Still No Go! Here’s an excerpt:
I can remember hearing from other transplant recipients in past years, bemoaning the fact that they still weren’t “back to normal” months or more after their stem cell transplants.
I didn’t pay much attention at the time. But now I think I might understand how they felt. Like those I have heard from in the past, I am still not fully recovered from my transplant…
Yep. I tire more easily and recover more slowly now. I’m on a minimal 5 mg daily Revlimid dose and I receive a standard dose of sub-q Velcade once a week for four weeks, with four weeks off instead of two.
Prior to transplant I was taking 25 mg Revlimid (down to 15 mg toward the end of induction), Velcade once a week for a four weeks with only two weeks off in between cycles AND 40 mg dexamethasone each week.
AND I STILL FELT BETTER!
Later in the column, I explain how difficult it has been for me to build any significant muscle mass since I started using Revlimid over five years ago:
There’s more. I have been diligently trying to re-build some muscle following my transplant. Since I am living with residual bone damage, I can’t lift heavy weights. But some controlled movements are safe. For example, I can still do push-ups; I’m up to four sets of thirty.
But you wouldn’t know it by looking at me! I do squats using dumbbells, leg extensions, rowing, arm curls, and much more – all to no avail.
I met my wife when I hired her to manage a health club I had built in a small town back in the 1980s. I was a football coach for 10 years. My point: I know how resistance training should work. For example, even if you can’t do heavy lifting, multiple sets of push-ups should start to show in one’s chest and triceps, especially if you are consuming lots of extra protein like I am.
Is this a result of my transplant? Or does taking Revlimid – even at low doses – make it more difficult to build one’s body back-up? After all, my understanding is that Revlimid restricts our bodies’ ability to create small new blood vessels. While that’s a good thing when one is trying to starve new myeloma lesions, I’m guessing that Revlimid wouldn’t be a bodybuilder’s best friend…
I lost about 18 lbs in six weeks after I fractured a vertebra and was stuck in bed for several weeks–then became deathly ill while undergoing extensive radiation therapy at the same time I started using Rev and dex. No fun!
And in all this time, I have never been able to regain the much of the muscle mass I lost over those first six weeks. I drink a quality protein supplement and eat more meat than I probably should. It doesn’t help. Raw nuts? I eat them almost non-stop; grazing throughout the day.
Now don’t get me wrong. I can put on weight. But it tends to be fat and water. No muscle need apply!
If you would like to read more, you can find my column at Myeloma Beacon.com.
Today I spoke to a great group of patients and caregivers in Clearwater, Florida. Someone asked me:
“Pat, you recommend that we keep our bodies strong and healthy so we can withstand chemotherapy. Can you give us specifics about how to do that?”
Great question! At the time, I simply suggested a few websites where members of the group could find information about good nutrition, including Danny Parker’s column on this site. But now I realize that isn’t good enough. So I would like to give a more complete answer here tomorrow. Hope that he’s reading!
Until then, feel good and keep smiling! Pat
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