It has been fourteen months since my autologous stem cell transplant.  Although I’m in remission (Thank God!), several challenging residual issues remain.

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.

I noticed it again last weekend.  After doing an hour of light yard work, I felt faint and out-of-breath.  So, I took a break and finished later in the day.  And I notice it every Wednesday when I head over to my local infusion center for blood work and sometimes subcutaneous Velcade ^[1] (bortezomib).

One could ask, “But Pat, shouldn’t you expect to tire easily while you are on maintenance therapy?”  Fair enough.  But I am on a lighter treatment regimen – using the same drugs – than I was before my transplant.  And I feel worse!

And don’t get me started about how I’m practically in a coma every morning when it’s time to rise and shine…

How I feel is reflected in my weekly blood work.  My neutrophil (ANC) count is chronically low, even with more time to recover between cycles.

Revlimid ^[2] (lenalidomide) is the most likely culprit.  But my dose has been cut all the way down to 5 mg, and I am still neutropenic (low white blood cell count) once a month.  That never happened to me pre-transplant – and I’m not even taking dexamethasone ^[3] (Decadron) any more!

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 have asked my doctors about all of this – the fatigue, inability to recover quickly after doing lawn work or exercising, and the inability to build muscle – and they just shrug.  I can practically read their minds: “We’re keeping the guy alive, isn’t that enough?”  NO!  It’s not enough!

While I will be the first to agree that novel therapy agents were never designed to be used indefinitely, ongoing maintenance therapy is becoming the norm.  I believe the drug companies that manufacture these chemotherapy agents have a responsibility to help our physicians develop strategies to help us live better lives.

Sorry, but it isn’t enough just to keep us alive anymore!

All things considered, I’m doing just fine.  But I think myeloma survivors are doing ourselves a disservice by not pushing our medical teams to work together to try and overcome as many quality of life challenges as possible.

I hope October is a great month for all!  I would love to hear from some of you who have had stem cell transplants one, two, or three years back.  Are any of you still having “residual issues”?

Feel good and keep smiling!