There’s been a fair amount of discussion lately in the columns and comment boards here at The Myeloma Beacon about stem cell transplants, as well as their effectiveness and their impact on our bodies.

Myeloma patients who have yet to have a transplant often scour the Internet looking for help and information about what they may face.  For many, stem cell transplantation is not an “if,” but more a matter of when.

The pre-transplant period brings for most people uncertainty, anticipation, and some trepidation.

Trying to understand the impacts that stem cell transplants have – physically and mentally – is a challenge.

Perhaps, some of that can be answered by learning from others about how the transplant experience impacted them, and how others have managed through the process itself and the aftermath.  Most cancer programs that do stem cell transplants readily put people in touch with others who have already had the experience, both in group sessions and on an individual basis.

We are all different.  Multiple myeloma can manifest itself in a wide range of ways, but there are common things that everyone confronts before, during, and after a transplant. An autologous transplant, that is.  Allogeneic transplants are “a whole ‘nother story,” as they say in Nashville.

Once you’ve accepted that pretty lethal dose of melphalan (Alkeran) – although there are some experimenting with a reduced-intensity process – there’s no turning back.

If I had any irrational fear before my first stem cell transplant, it was that the transplanted stem cells would not engraft (reproduce new cells), an extremely rare but potential occurrence.  I figured that they would tell me that I had an unrecoverable and completely non-functioning immune system on the day I also learned I had won untold millions in Powerball.

Dealing with my irrationality seemed pretty easy.  I had enough stem cells frozen for two more stem cell transplants.  They would just do it again.

In my case, I had tandem transplants (two transplants a few months apart).  I tolerated the first melphalan quite well.  Not so much the second time, although it wasn’t all that bad.

David Rice, the nurse practitioner working with the transplant teams at Memorial Sloan-Kettering Cancer Center at the time, explained that the second time your body knows what to expect.  It didn’t like the melphalan the first time.  It likes it even less the second time, he said.

So what should you expect while you’re in the hospital for the transplant?

Well, there’s nausea, usually managed by a drip from one of the bags on the ever-present IV pole, and pain medications, often to combat the infernal mouth sores that can accompany the process.

The destruction of your bone marrow causes its own set of temporary, but significant, problems, compromising your ability to create new platelets and new red blood cells.  As a result, you’ll need infusions of platelets so that your blood can clot, and blood transfusions to boost your red cell count and get your body the oxygen it needs.

Before my transplant, I thought that my hospital confinement would be tedious and boring, but it was much less so than I anticipated.  The days went by pretty quickly.

In addition, you get better with practice.  They let me go home about three weeks after my first transplant.  I was back home two weeks after the second one.

The most challenging part can be the immediate post-transplant period.

There’s the difficult part mentally.  Getting results from a transplant requires some patience.  This means fighting back the anxiety that can confront some people when it isn’t instantaneously apparent whether the transplant was beneficial.  I think it’s the world we live in these days – we want results, and we want them now.

Yet, it can take several weeks, even months, before you know how successful the transplant was.

In my case, the first transplant achieved only modest results – a partial response by the eve of the second transplant in May of 2007.  Soon after the second transplant, I reached what they call a very good partial response.  By October, that had improved to a complete response, a remission that turned out to be fairly durable, lasting about three years.

There are also the complications that crop up right away.

For instance, my local oncologist, Dr. David Mastrianni of Saratoga Springs, put me in the hospital on several occasions to combat infections, and one particularly nasty pneumonia, during the first six months.  This tended to happen to me inconveniently on weekends, and especially on holidays.

Odd things happened too.  For example, if I sat outside in the sun that summer, my body temperature went up.  Back in the shade, it went back down.

I asked Dr. Raymond Comenzo, who was my doctor at Memorial Sloan-Kettering at the time, “What, have I become a reptile?”

This was, fortunately, just a phase in the process.

Then there’s the fatigue.  I don’t think I was prepared for it.

I was gung ho to resume an exercise routine, but that proved to be a lot harder than I anticipated, particularly with the many interruptions from infections that would stall any physical progress.  Then I read this article about how, um, dirty and germy club exercise equipment is.  Given the marginal state of my immune system, it suddenly seemed like a good idea to stay away from those places.

Being immunocompromised is perhaps the most challenging of side effects of life after transplant.  Over time, I was often getting “in trouble” with infections, particularly respiratory ones, and my multi-city myeloma team set me up about a year and a half ago for monthly IVIG infusions that continue to this day.  IVIG stands for Intravenous Immunoglobulins.  They are harvested from the blood transfusions of sometimes more than a thousand people.  They boost your immune system temporarily.

Surprisingly, there are also side effects that don’t manifest themselves for many months – even years.  One of those is cataracts, something I have had to confront.  Mine came on more than five years after the transplants.  In my earlier research into transplants, I missed cataracts as a longer-term side effect.  Of course, more than two years of taking dexamethasone (Decadron) can cause cataracts too.  Between the dexamethasone and the transplants, did I really stand a chance of not getting cataracts?

Now, here’s the good part.

As I said, I achieved a complete response.  The plan was to follow-up the transplants with a year of maintenance therapy with Revlimid (lenalidomide) and dexamethasone, but I barely made it through two cycles because of infections that beset me each month.

Dr. Comenzo said I should abandon the maintenance idea.  And we did.

I have said many times that this was a blessing in disguise.  Once we dropped the post-transplant maintenance idea, I had three years without a single treatment drug splashing around in my bloodstream.

Life was good.

Research indicates that maintenance may be extending the time to disease progression, but the gains in overall survival are modest.  I’ve said in the past that when the end comes, I may then lament the four months or so I might have had tacked on to my life had I continued with post-transplant maintenance.  However, based on my anecdotal experience, if you achieve a durable complete response (or maybe even a durable very good partial response), I’d stay away from Revlimid (or any novel drug) maintenance for as long as possible.

Clinically, there are some myeloma docs who agree with this – and there are others who do not at all.

From a quality of life perspective, however, my treatment-free complete response days were wonderful and I wouldn’t do anything differently.

For some perspective, since my relapse, I have been on a Revlimid-dexamethasone regimen, and I’ve had to deal with a wide range of side effects, not any of them pleasant and some quite nasty.

There’s a lot more to say about dealing with life after transplant.  But that’s for another day.