Arnie's Rebounding World: The Second, Salvage Transplant

When I was first diagnosed with multiple myeloma five and a half years ago, my initial treatment consisted of induction chemotherapy with vincristine (Oncovin), doxorubicin (Adriamycin), and dexamethasone (Decadron) followed by an autologous stem cell transplant. I had a good response to the treatment but never quite got into remission.
The course of my disease over the next few years took me through a roller coaster of treatments with Revlimid (lenalidomide), Revlimid with dexamethasone, Velcade (bortezomib) alone, and Velcade plus Revlimid. Each of these treatments resulted in a pretty good response which lasted anywhere from six months to a year. Eventually, I always relapsed.
I finally wound up on a clinical trial with pomalidomide about which I have written in a previous post. The clinical trial did not go well. While pomalidomide did seem to work in at least stabilizing my disease, I ended up in the hospital with pneumonia. We were forced to stop the pomalidomide treatment.
When I stopped taking the drug, my calcium levels quickly became dangerously high and my myeloma became very active. I was getting pretty sick and running short on options. My doctor recommended trying to get my disease back under control with chemotherapy with cyclophosphamide (Cytoxan) and then a second stem cell transplant.
There has been a lot made of the tandem stem cell transplant protocol for newly diagnosed patients popularized by the University of Arkansas' Myeloma Institute for Research and Therapy (MIRT) . This procedure involves using two stem cell transplants in fairly quick succession following induction chemotherapy. The idea is to try to knock out any myeloma cancer cells that might survive the first transplant with the second transplant.
While controversy in the myeloma world still rages over whether this approach is better, most centers other than MIRT tend to use a single stem cell transplant approach. However, even if only one stem cell transplant is planned, enough cells are harvested for two and maybe even three transplants at the time of stem cell harvest. These cells can be stored frozen for almost an unlimited period of time.
The idea of using the stored stem cells for a second transplant in the relapse setting after failing many of the newer agents has come into vogue. In fact, a few years ago, I asked about a second transplant, and it seemed no one thought it was of much benefit.
Now it was back on the table in a big way. I am not sure exactly what changed, except that now that so-called novel agents like thalidomide (Thalomid), Revlimid, and Velcade have been around for awhile, it seems that there are more and more people like me who have been on all of the newer drugs and have become resistant to them. They are in need of another treatment option.
A recent article, which was actually highlighted at the Myeloma Beacon last month, reported on the results of second transplant as salvage therapy. The results were pretty encouraging and best for people who got a longer response to the first transplant.
As I mentioned, for me at that point the options were pretty limited. I was sick in the hospital. The high calcium levels were affecting my kidneys. I was actually excited about the prospect of an aggressive treatment to get my disease back under control.
I had been through a stem cell transplant before. I knew what it was all about. Not fun, but if that was what it took, I was more than game. Of course, I was having nightmares that they wouldn’t be able to find my cells from five years ago in that big freezer.
In the fall of 2010, I started two cycles of chemotherapy with cyclophosphamide, vincristine, doxorubicin, and dexamethasone. The response was really encouraging. My monoclonal protein level (M-spike) was dropping quickly, and despite the chemo, I was feeling better. After about a three-week break, I was ready for the stem cell transplant.
My first stem cell transplant had been done on an outpatient basis. For this one, it seemed there was no discussion. I was going to be admitted to the hospital.
The Moffitt Cancer Center has a beautiful new transplant unit, and I knew they did a high volume of transplants. I felt like I was in very good hands.
The preparative chemotherapy for the second transplant was different than for my first transplant. I received six days of cyclophosphamide and busulfan instead of the two days of melphalan (Alkeran). The net effect was the same: diarrhea, mouth sores, weakness, and nausea. But the nurses and the whole transplant team seemed to be on top of everything, heading off small problems before they became big problems.
I received my stem cells (which they were able to find without any problem) at Christmas last year, and I engrafted after about 10 days.
Slowly everything started to improve. After engrafting, every day was a little bit better. Everyone, including my doctor, asked me how the second transplant compared to the first one. Without a doubt, it was easier. I knew what to expect, how to handle it, and I was not in awe of the process.
And finally, the results were good. My M-spike dropped to a level of 0.1, and I returned to a relatively normal life. I started maintenance treatment and was feeling great.
Would I do a transplant again? In a heartbeat if I needed to, but now I’m out of cells.
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Great story. I hope you remain in remission for a long time. I am a poor mobilizer. How many stem cells were used for your second transplant? Did they experience any shelf life issues. Since you used melphalan I suspect additional harvest is not possible.
Dear Arnie,
I read your story and hope you are finally doing well. I was 90% infected when I went UAMS in Little Rock and was bless to get as my doctor the director. I really had no hope for me as for my kidney where working at 7%. But he worked with me as a day to day patient, I had heavy chemo and had two stem cell transplants (they were my own). That was in March 07 and I have been cancer free since then. Keep in touch with what is coming out of UAMS, they are on the cutting edge of MM.
Good luck and thank you for sharing your story.
Theresa
Glad to hear you are doing better! I think the only thing that "changes" is data collected over time. We are guinea pigs for sure.
I'm glad to hear the second transplant has been successful so far and will pray it continues that way. Your experience is very encouraging for me. I am currently in one of the Carfilzomib studies for newly diagnosed patients (near complete response so far), but anticipate at some point I will relapse and at that point my next course of action will probably be a SCT. I went through collection about two months ago and fortuantely they collected enough stem cells for three tranplants.
Dear Dr Goodman:
People like you that can effectively communicate the many scenario's that come with MM are to be congratulated. Your recap of your 2nd SCT was very educational and extremely informative. Many thanks. You recently wrote an article about relationships between a doctor and a patient. I was so impressed that I gave a copy of your article to my GP who due to his efforts finally diagnosed my condition of SMM. Unfortunately. I deleted that article from my computer system in error as I also wanted to send a copy to my Onc/Hema. If at all possible, can you email that article to me. Many thanks and my best wishes to you now and in the future.
Sincerely,
Rita
Dear Rita,
You can find all columns that Dr. Goodman has written so far for The Myeloma Beacon here:
http://www.myelomabeacon.com/author/arnold-goodman/
We hope the above link helps you find the column that you were looking for.
Best wishes to you Arnie...your intelligence and perseverance will no doubt help in your recovery! This is a strange illness with all of its potential ramifications and it seems that every patient has a different experience. I am very glad to hear that you are doing much better now. Some people do have 'allo' transplants if they can find a matched donor....but hopefully you won't need another transplant at all!
I am always curious, because myeloma remains so individualized, what the chromosomal abnormalities are in each patient, if any. These make a tremendous difference in treatment outcomes. Would you mind sharing what your genetic results are? Thank you. Suzanne Gay
Thanks for the story. Lots of us with MM may need that second transplant at some point. Good to know that the second one was easier. God Bless.
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