Manhattan Tales: The Stem Cell Transplant And Beyond
As you may remember from my previous column, I was admitted to the hospital for my stem cell transplant at the beginning of March (on March 5 to be exact).
I had no initial devastating reaction to the melphalan (Alkeran) that I received on the day of admission or the infusion of my stem cells over the following two days.
While my first 10 to 11 days were certainly not pleasant, they weren’t “off the charts” bad either. For the first week, I was allowed to walk in the corridors with my IV fluids, where I could look longingly out the windows on to Central Park and the flowering trees that had burst into bloom prematurely this spring.
Unfortunately, 11 or 12 days into the process, when my white blood cell counts had (as anticipated) dropped to near zero and I was confined to my room, I developed “issues.” Just when I felt I had gotten over the hump, the complications arrived. I started having chills and then fever.
The next five days were indeed “off the charts” bad. It seemed that the chemotherapy found every weak part in my body and attacked. Fever, edema, low blood oxygen levels, bone pain, irregular and rapid heartbeat – what a litany!
I have visions of masked nurses and doctors gowned up in yellow robes hovering over my bed at 2 am in the morning. To me, it seemed more like scenes from a movie than something in reality. I wondered whether one of the women in a large, flowing yellow robe was an angel. (I learned later that she was the nighttime nurse practitioner in her eighth or ninth month of pregnancy).
They pulled me through.
I have little memory of what actually happened. I know I saw innumerable specialists – a cardiologist, a urologist, a pulmonologist, as well as an internist and hematologists.... (A few of them I will need to see again, among them a surgeon to schedule the repair of a couple of mysterious new hernias.)
At times during this difficult five-day period, it crossed my mind that I might not survive. However, like well over 95 percent of stem cell transplant patients, survive I did.
And, as I write this posting eight weeks after my discharge, the intensity of the experience has substantially abated. And I am optimistic that I will recover both physically and psychologically.
Nevertheless, I want to share some of my observations from the process with you:
First, the doctors got the ailments under control. I was discharged on day 19 after admission, only one day more than the average.
While for some reason my body objected more strongly than average to the lethal doses of chemicals, the physical symptoms proved to be treatable.
Second, and of inestimable importance to any hospital patient – particularly patients as ill as I was – the nurses were extraordinarily informed, caring, and responsive. They also explained the procedures they subjected me to and when needed kept me company in the wee hours of the night.
How transplant nurses do not burn out with the constant demands placed on them remains a mystery to me. Several of them have worked for over 20 years in the transplant service. Forty years of lawyering had not prepared me for the caring people who treated me. Angels of mercy, pure and simple.
Third, I am rapidly forgetting the intensity of physical despair I felt during the worst days of the stay. As has been noted by others, how many women would go through childbirth a second time if they fully remembered the pain of the first? The mind has this wonderful protective mechanism of selective amnesia.
Finally, my family and friends were tremendously supportive. My wife (who as a doctor knew far too much for her own good about the complications I was having) somehow coped with the stress.
There were also a few surprises along the way.
Once my body’s five-day tantrum with the chemotherapy abated, my body fairly quickly purged itself of the fluids and chemicals it did not like. I lost 20 pounds of water in the process.
I was shocked to go into the bathroom toward the end of my three-week stay to shave (I thought I would try to clean myself up for the attending so that she might consider sending me home in a few days) to discover that I had not a hair on my face. Not much hair on my head or the rest of my body either. (Peach fuzz returned to my upper lip three weeks after discharge, and at seven weeks, I think I feel a bit of hair growing on my bald pate).
I left the hospital with an oxygen tank that I didn’t need and pretty normal blood cell counts, which I found to be quite miraculous.
I also remember vividly how good it felt on the ride home to be out of that 15-foot square hospital room and to see the forsythia cascading over the walls of the transverse through Central Park and the cherry trees in bloom.
The stem cell transplant is a wonderful process to have behind you. Hopefully, I won't have to have another transplant and whatever chemo I’m placed on will keep the myeloma cells in check.
Since my discharge two months ago, I’ve been enjoying the glorious spring, and, though napping every day at least once, I have extended my daily walks to three miles. I have even ventured back into the swimming pool and done some leisurely laps.
I have plenty of residual aches and pains but look forward to the remainder of the spring
Good luck to those you who are about to embark on this particular journey. There really is light at the end of the tunnel.
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Stephen, Glad to hear you got through your stem cell transplant well, although it wasn't really a 'walk in the park'! Hope all goes smoothly from now on for you!
Thank you Stephen for sharing your detailed experience in this article. I'm going in for my stem cell transplant June 6th and its good to know what to possibly expect during my hospital stay. Glad you're feeling better, wish me luck.
Mark
Stephen: Thank you for sharing your harrowing stem cell transplant story with us. I'm glad to hear that many of the negative effects have abated and that you're on the mend. While my two ASCTs (conducted on an outpatient basis)were more difficult on my body (and psyche) than my induction therapies, I am most grateful that I didn't have to endure as difficult a time as you unfortunately did. I echo your sentiments regarding the heroic nature of our medical professionals, and especially those working in the transplants programs. I want to believe that they would rescue me as adeptly as yours have done. I hope that you have a beautiful, healthy summer in the City.
Stephen: Thanks for the insight on your ASCT...mine started March 6 out here on the west coast at UCSF with the infusion March 8. Melphalan was tolerated well, and for those going into an ASCT soon....do the ice treatment in the mouth with the Melphalan. I did, and absolutely no mouth sores. Yep, I also lost 10+ pounds, perhaps from the nausea, and general lack of appetite while in the hospital. Glad to hear your recovery is progressing well.
Stephen, your column today was very helpful and encouraging, although tranparent in sharing the difficult days you experienced with your stem cell translplant. I have been unsuccessful in reaching any level close to "complete response" in the 2 1/2 years of treatment for my MM. Though the doctors at my research hospital have been encouraging me toward transplant, I have been frightened and dragging my heels. The more accounts presented, like yours, the more confident I become that this is something I not only should do, but can do. Thank you for taking the time to write this column so soon after your own major life event.
I have now been 8 months out of transplant. I did not have the issues you had, they were not bad. I expected worse and was pleasantly surprised. I now have more energy than I have had in years past. I found that going back to work was great therapy! I went back to full time 1month after discharge. No hair, 30 pounds lighter, but so very glad to be back! My friends and co-workers were my favorite treatment. So 1 year after diagnosis I am 100 percent in remission. A clean bone marrow biopsy says no cancer cells found. I start on Rev in a couple of months as maintaince. So I wish this success to you. I also had wonderful chemo nurses (angels), in the hospital. My nurses are survivors as well, so not only are they so compassionate but understand what you are going through!
Keep the faith and continued wishes for your on going recovery.
Some of the readers of Stephen's column may be interested in weekly polls The Beacon has done related to stem cell transplants:
How difficult was your first autologous stem cell transplant?
http://www.myelomabeacon.com/forum/weekly-poll-the-challenge-of-an-auto-stem-cell-transplant-t731.html
How many months was it before you were able to return to work at least part time after your stem cell transplant?
http://www.myelomabeacon.com/forum/weekly-poll-return-to-work-after-stem-cell-transplant-t1018.html
This forum thread also has a number of postings related to the impact of a stem cell transplant on one's ability to do day-to-day activities, including light work:
http://www.myelomabeacon.com/forum/stem-cell-transplant-and-ability-to-do-light-work-t464.html
Finally, this link, http://bit.ly/LzipMS , will take you to a list of all the stem cell transplant-related discussions in the Beacon's forum.
Mark -- if you are going for the transplant on an in-patient basis, a couple of very great but very minor pieces of advice: First, bring a a few photos of loved ones and perhaps a familiar drawing or two to decorate the wall and window sill of your hospital room. They will bring you great cheer (and lots of opportunities to talk about your family, instead of just your health) as the days come and go. Second, the hospital let my wife bring quilts for the bed -- again a great improvement over hospital whites!
Janice -- my wife and I too were very reluctant for me to have the transplant. We held off for as long as my doctor would let me, as he said there were no adverse affects from waiting as long as my blood numbers were in reasonable control. But even though the transplant is difficult, few people, if anyone, get all of the potential nasty side effects listed in the booklets describing the transplant process! It ain't pleasant -- but it really does help increase survival times!
I understand there can be a wide variation in how people respond to the chemotherapy in the transplant process. It went pretty well for me and I remember it well. The fatigue is pretty bad, doing about four laps walking around the hospital floor was all the exercise I could do for the day. I was able to shower and change myself almost every day which was a lot of work but I felt so much better afterward. I was in for 21 days, a bit longer than most because I was not able to eat and lost over 20lbs during the procedure. I followed the instructions and brushed my teeth with a new tooth brush every time and used the mouth rinse and ice. I had no mouth sores which was very fortunate because others have said that was the worst part for them. I too lost nearly every hair on my body. I did not need to shave for about three or four months afterward, but now it seems to have come back thicker than before. After three weeks in the hospital, the experience of going outside the first time is one I will not forget. The smell of green grass, warmth of the sun, going through Central Park and knowing you made it must have been magical. The hospital staff said they had one patient who brought in their computer and fax machine and was doing work out of the room the whole time while asking everyday when they could go. Near death to working in bed, that is a pretty wide variation.
Hi Stephen!
Kudos on surviving the SCT!
I was wondering from your previous column it appears you delayed HighDose Chemo for 2 years following your initial induction therapy, is that correct?
Does that mean you had reached a CR following induction and were able to sustain that CR for 2 years?
impressive if so..did you mention what your induction drug regimen was? Are you considered a 'standard risk' MM patient?
When you decided to submit to the High Dose Chemo and SCT..where were you numbers for CR, B2, FLC's?
Just curious.
Hope you are out and about enjoying this Holiday weekend!!
I came across your column today while browsing for the latest information on primary plasma cell leukemia with which I was diagnosed 2 years ago today. I went through autologous stem cell transplant in September of 2010 and am currently still enjoying complete remission.Very glad to hear your procedure was successful. I did the bulk of my transplant outpatient and was very fortunate to only have to spend a bit over a week actually on the BMT ward. I did have to visit the clinic daily for fluids, labs, etc. but having spent 3 of the previous 6 months in the hospital dealing with the masks, car sickness and port care at home were well worth the discomfort not to have to spend any more time than absolutely necessary as an in-patient. I was only admitted after spiking a slight fever a week after my actual transplant.
I know the fatigue is wearing but you should look forward to feeling very much like your old self soon. My particular case was a bit different due both to my diagnosis of PCL in lieu of MM as well as the fact that my diagnosis came during an extended recovery from bypass surgery that had weakened me substantially but now a bit over 18 months on I must say I feel as well as I have since my diagnosis.
Hopefully with the time purchased through this frightening, uncomfortable but amazing procedure we will be here to see advances on par with those of the last ten years of myeloma research.
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