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Birds In Spring: The Post-Transplant Life

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Published: Oct 30, 2012 4:59 pm

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.

Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

Photo of Lou Ganim, monthly columnist at The Myeloma Beacon.
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11 Comments »

  • Robert P Bean said:

    Thank you for your article I enjoyed it very much.Diagnosed may 14 2010. First transplant Oct 15 2010

  • LibbyC said:

    Hi Lou,
    I am glad you had a number of years in remission. I have had both an auto (June 2010) and allo (April 2011) and certainly understand some of the things you have gone through. It would be great if someone could develop a drug that will control the myeloma without the side effects – we can only hope.

  • Mary Degenkolb said:

    I am 1 year out of STC, my own cells. I have noticed that my vision is not all that good. It seems since transplant, I have to put on my “computer” glasses more. I wear trifocals and it is hard to see the computer with out glasses for just that close up work. I use the trifocals for all the time, but lately I can not see well with out my other glasses. I am on maintenance with Revlimid right now, but unable to get to the recommended dose of 15 mg. due to side effects. RASH, itching, RASH, itching, and more RASH. Just anywhere my skin gets touched by other skin (behind my ears, under my bra) and bang – I end up with a weeping itchy rash and so far no help. I did find a drug that I was given over a year ago for hives and it works!!! Yeah,,, no itching, no RASH!!! It works, it’s alive, HA HA. But no problems since transplant, no fevers, infections, or colds. I don’t know why but I lucked out. But the exhaustion is the worse. I find myself falling asleep in the weirdest places and while I’m doing the simplest things. But I to am thinking of the ‘watch and wait’. I don’t see the Revlimid doing me that much good, if I can not get up to the dose required.

  • Scott Hansgen said:

    Enjoyed the article Lou. It seems that no matter how much i think I know about myeloma, I always learn something new on a weekly basis. I didn’t know about the cataracts being a potential side effect.

    I had mt transplant on June 14, 2012. The biggest problem I had was with the high dose Melphalan. I was on the low end of the scale as far as bad side effects are concerned. I honestly wasn’t sure if I would actually make it out of the hospital. I was hospitalized an additional 3 times after my initial release and they were all due to dehydration. i couldn’t force myself to eat or drink much of anything because of the nausea and the horrible way that everything tasted. Not a pleasant experience to say the least.

    I enjoyed your article. It’s nice to connect with fellow patients fighting the same battle. Never had that opportunity through either of the hospitals where I get my treatment.

    Thanks Lou!

  • Sherri Parker said:

    I enjoy reading your articles. There was a time after my transplant that I could not concentrate long enough to read an article-still kind of hard. I always loved to read and I miss sitting down and reading a good book now… just another part of my post transplant life. But considering the fact that my oncologist upon diagosing me, didn’t expect me to last a month, I consider myself very fortunate. Tomorrow marks 4 years since I was diagnosed with a fatal disease I had never heard of. I had my SCT 5 months later. I acheived a CR. When MM begins to rear it’s ugly head, I go back on chemo until those all important numbers go back down. I am nearing remission again and anticipating a break from treatment soon. Life for me is so different now, but also so good.

  • suzierose said:

    Love Love love your Tennesian syntax on whole nuther story!!

  • Richard Blustein said:

    I am due to have the transplant in Feb after being in remission or near remission for 3 years. Your article gives an interesting summary of all the good things I can expect.

  • nancy shamanna said:

    Hi Lou, Thanks for sharing your story. I am glad to hear you have had some years without being on any chemo drugs. That is my situation right now and I am feeling much better than before. I think that this time has given me a chance to recover from all of the really strong chemo drugs, plus the auto transplant, that I had as my treatment. Of course I realize that everyone’s situation is unique medically, but it is good that we have a chance to share, and compare and contrast with each other! What works for one might not for another of course.

    Have you already had the surgery for your cataracts? Friends and family who have had that surgery are pleased since the new lenses implanted give vision correction as well as clarity. So not only can they see clearly, they don’t need such strong glasses as before, or no glasses (or contact lenses). So wishing you all the best on that, and your myeloma treatments also!

    When you mention the heating up and cooling down (so funny that you compared it to being a reptile!!!) it just reminds me of menopause! Most women my age have these ‘thermostat’ issues….they come and go and seem to last for years! I noticed those problems too but just chalked it up to being my age and female!

  • Lou Ganim (author) said:

    Thank you all for posting and for your kind words. We are all so different, and how our bodies react to the insults of treatment, and particularly stem cell transplant, is going to vary considerably. For example, Mary writes about deterioration of her vision. I had the opposite — myeloma and treatment drugs had caused me vision problems, but post-transplant, my vision improved considerably and almost immediately. And, of course, as Sherri writes, there are the concentration issues — I think all the “trauma” we endure with the disease and treatment can’t help but make us be brain-dead at times. …btw, suzierose, I’m a New Yorker through and through, but there are two other places where I’d be happy to live, and one of them is Nashville. Nancy — yes, I’ve had cataract surgery…it was an eye-opening experience.

  • Holt said:

    An “eye-opening experience” — I love it. Thanks for sharing your transplant experience with us Lou. I have a question for you about cataracts. I also developed cataracts after using dex and prednisone and am scheduled for my own “eye-opening experience”. But I forgot to ask the doctor if the cataracts can develop again as I go through more MM treatment, or if eyes would change in some other way that would reduce the benefit of the implanted lenses. I wondered if you had that discussion with your doctor and could share your “insights”.

  • Janet K.R. said:

    Your words have helped calm me. My husbands transplant will possibly happen Jan 2013. Is anyone here also diagnosed with 4/14 translocation and 13 Q deletion? What's your experience before vs. after transplant regarding quality of life?
    Thank you for taking the time to share.