Arnie’s Rebounding World: The Donor Transplant
I am writing this column 30 days after my donor stem cell transplant.
The road to this point has been far from easy. Nor do I believe that I am anywhere near “out of the woods” as far as recovery.
However, I am feeling pretty good about where I am at right now and about my decision to go forward with the transplant.
First, a little background:
I have written about this in some of my previous posts. Since being diagnosed about 6.5 years ago, I have undergone just about every treatment available for multiple myeloma.
I have had two autologous stem cell transplants (that is, transplants using my own stem cells). The first was after my initial therapy after my diagnosis, and the second was about 1.5 years ago after a bad relapse.
About 10 months after the second transplant, my myeloma began to progress again in a very aggressive way, becoming resistant to just about everything that we tried.
One of my myeloma doctors, Dr. Ken Anderson from the Dana Farber Cancer Institute in Boston, whom I was seeing for second opinions, began to strongly push the idea of a donor (or allogeneic) stem cell transplant.
Autologous stem cell transplants, which use your own cells, are fairly standard treatment for multiple myeloma. However, the role of transplants using stem cells from a donor remains much more controversial for multiple myeloma. In particular, the role in patients with relapsed or refractory disease is unclear.
In fact, not all of my doctors agreed that this was the best way for me to go.
It seemed, however, that I was in pretty dire straights.
I had read all the data on the survival of patients who had become resistant to all the treatments that I had been on. It seemed that even with another clinical trial drug, and we did discuss Kyprolis (carfilzomib), elotuzumab, and others, that the best we could hope for would be a few months before my myeloma would progress again.
None of the experts seemed to feel that any of the new drugs would fundamentally alter the course of my disease.
Faced with this prospect, the idea of the donor transplant began to make more sense. I understood that the donor transplant was high risk, particularly in “heavily pretreated” patients, as everyone seemed to like to refer to me these days.
I was often quoted a mortality rate of about 20 percent for the process. But what was 20 percent versus the alternative, which seemed to me to be a slow inevitable demise.
The donor transplant seemed to at least offer a chance for some longer-term meaningful disease control and even, dare I say, a cure. It was in my mind my last best shot.
The one catch is that almost everyone agreed that in order for the donor transplant to have any chance of working, I needed to go into the process with fairly good disease control in order to give the donor cells a chance to take over and fight the myeloma cells (the graft-versus-myeloma effect).
Fortunately, I responded surprisingly well to a couple of cycles of chemotherapy with Velcade (bortezomib), thalidomide (Thalomid), and dexamethasone (Decadron) plus cisplatin, doxorubicin (Adriamycin), cyclophosphamide (Cytoxan), and etoposide (known as VTD-PACE). It brought my myeloma under control enough to make the transplant possible and for the transplant team at Moffitt Cancer Center, where I am being treated, to be onboard with Dr. Anderson.
The donor for an allogeneic transplant can be a sibling, if they are a match, or a matched unrelated donor from an international database.
Despite having two sisters, neither were a match for me. I did have several perfect matches in the database, and a donor from Germany was found.
There was an excellent article in The Myeloma Beacon last week about a German study of donor transplants followed by Revlimid (lenalidomide) maintenance therapy. The article outlines some of the details of the process.
In an autologous stem cell transplant, high dose chemotherapy is given to wipe out the immune system and any cancer cells, and than the patient’s harvested stem cells are given back to jump start the immune system again.
In a donor transplant, the process starts out the same with high dose chemo. However, since the cells come from a donor, there is the issue of the new cells trying to fight the cells in your body (graft-versus-host disease). This can affect almost any organ system and requires long term immunosuppressive medications and very close monitoring.
About a week before the planned day of admission for my transplant, I developed a mild upper respiratory infection. The transplant team was adamant that we could not proceed until the virus was completely cleared from my system. This set everything back close to a month.
Finally, the big day did come, and I was admitted to the Bone Marrow Transplant Unit at Moffitt. I received five days of chemo, and after a day of rest, I received a transfusion of the donor cells and was also started on immunosuppressive medications.
Similar to autologous stem cell transplants, it takes about 10 to 14 days for the new cells to engraft or to take hold in the bone marrow, but the recovery from the donor transplant is much more difficult and complicated.
The fatigue is worse, the number of problems that can arise is much greater, and the intensity of the care and monitoring is also much greater.
During my almost three weeks in the hospital, I hit several bumps in the road, which I will write about in future columns. Fortunately, my transplant doctor Dr. Claudio Anasetti and the transplant team at Moffitt seemed to be on top of everything, and they very quickly headed off problems as they arose.
So, here I am at day 30. I am home recovering, feeling like I am on the right track and that I have left nothing on the table. No matter how it turns out, I have done everything that I can do to give myself my best shot.
Arnold Goodman 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
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My thoughts ard prays are with you. I'm about 5 months out from my auto - also done at Moffitt. I can't say enough about the outstanding expertise at Moffitt. I feel very lucky that Moffitt is just down the road from me.
Dear Arnie,
Thank you so much for sharing your experience. I am sending you the most positive energy I can muster from my home here in California. You have obviously made the most informed decision possible. I can almost see your new cells seeking and destroying the mm cells.
Thank you again and take care, Stan
Dr Goodman,
I was just thinking about you yesterday so was very happy to see your post when I logged on.
I am so glad that you are doing well and the team at Moffitt are taking good care of you. May you continue to get stronger and stronger each day.
Best wishes from one Moffitt patient to another.
Congratulations Arnie, on being home and on the road to recovery!
My husband, Ron, had an allo transplant from his brother in 1998, (Toronto, Canada) followed by 14 fantastic, disease free years! Very upsettingly, the myeloma returned this April, and they do not want to try an allo transplant again. The doctors feel there is more benefit to CyborD ( forever? Are you kidding me?) as the treatment paradigms have changed from transplant (potential cure) to maintenance (forever on chemo). Very disappointing. I understand they are reluctant to do higher risk procedures when there are other treatment options, but the allo transplant was truly a fantastic solution at the time. He had a little bit of GVHD that was easily controlled by a short course of prednisone( easy to say now of course. At the time there was no way to predict how the GVHD would unfold). There were entire years that we didn't even talk about cancer.
As an aside, have you heard anything about the Osiris drug Prochymal possibly being used in adults to combat GVHD?
Hope you feel strong soon have many, many disease free years.
Dr. Goodman,
I am so happy to read this column. Like Michelle, I was recently thinking about you. I have learned so much from your columns. I hope all continues to go well. I am 16 months out from my allo and I am doing great. My QOL is outstanding - I have no therapy related side effects. I used an unrelated Donor as well.
I am hopeful that in a later column that you will address the issue that Ron's Wife brought up. It is clear to me that my QOL is much better than patients that are on continuos therapy. I am no longer a full time patient and I was diagnosed in late September 2010. I have not taken any myeloma therapy since my allo. For younger patients, why not try the curative approach (allo transplant)? I can use drugs later if I relapse. I would really like to hear your input on this issue since you were treated with a less aggressive philosophy than I was. I did my allo with myeloablative conditioning in my first CR.
Mark
Dr. Goodman, Keep up the fight. I am almost a year out of the auto transplant. So far so good. But thanks to the Beacon and your posts, I now know what I face if I refract or relapse. So I fight harder. Do more to take care and think about all my new found angels at the Beacon. I don't think I could go on with MM if not for all of you. My prayers and positive good feelings and wishes to and your family. I know they are in this fight too.
So good to hear from you, wish you all the best, lot's of prayers and hopes from great news!
Best wishes, Dr. Goodman and to your family too! Hope you can get lots of rest after this transplant time. Thanks a lot for sharing about the 'allo' transplant!
Thank you, Arnie! Your update is very much appreciated. Now you should start recovering more quickly. You are a brave man who took the road less travelled, and I hope you will remain in remission for many years, if not for the rest of your life. You have been in my thoughts and prayers. I look forward to more details about your progress and other thoughts as you continue to recover. Best wishes to you from Oregon! Jan
Outstanding! Very encouraging for all of us!
Looking forward to your future updates.
All the best,
Steve
Hey Arnie! I didn't realize that you had taken such a big step. So glad that you are doing OK! I have gladly agreed to take-over your duties helping to organize semi-annual patient seminars at Moffitt while you are laid-up. Looking forward to handing the reins back to you next spring...
Hello Arnie! It's wonderful to hear from you 'on the other side' and yes, it may be early days but you are doing so fantastically well - take little steps and you will get there. Your determination to beat myeloma gives a great deal of support and encouragement to us all.
Keep writing and looking forward to hearing from you again.
Best wishes.
Anne (in the UK)
I think you are very brave to have done an allo. It sounds like you are doing great. Take it slow and one day at a time.
"may you live long, and your journey be free of incident"
Best wishes, Christina
Arnie, I have been following your story and am so glad to hear this latest news. You may remember an elderly patient of yours, Dorothy Johnston, who told you about her son Al's multiple myeloma. She has kept you in her prayers. Al is five years into mm, has had two auto-SCTs. At 66, his hem/oncologist at James Haley VA hosp. says he is in such good physical condition that he could possibly be considered for an allo at some point. Al's current drug therapy is Rev-dex. His doc is going to add Velcade for a boost over the next month. Al's disease progression has been aggressive, like yours, so you are truly an inspiration.
Thank you everyone for your thoughts and encouragement. I especially love to hear from those who have had successful allo transplants in the past. Marks question about why allo isn't used more often as a cure instead of long term treatment is a complicated one. Obviously allo transplant is much higher risk and it doesn't always work. The drug treatments are getting better all the time. Since many people do very well with the new drugs a 15-20% mortality from donor transplant may be difficult to accept. Relapses occur after allo and in many cases some type of maintainance is still required. For the time being, except in certain high risk situations, donor transplant is not considered standard of care. I do know that at Moffitt a few years ago Dr Alsina was pushing for allo transplants at the time of first relapse but seems to have backed off because they were not happy with the results. But things are changing all the time.
Pat I am glad you have taken over the Moffitt seminars, looking forward to getting back in the Spring, let me know if you need anything
Dr. Goodman: I was diagnosed w/MM June 2011. I had the autologus t/plant in Dec2011. Within 30 days I was told that I should consider the Allo t/plant becos I was high rish as per my cytogenetics. I consulted w/the original oncologist who did not recommend "Allo" but his partner stated it was a good thing to do while I was cancer free. I was just told I was in remission in July 2012. But now I am fearful of MM's return. I have done some research on "allo" & according to Myeloma Canada website it is 50% chance of death or GVHD and there is "NO CURE" for MM. I am really confused as to what to do since all the google search engines for allo t/plants are few & grim. I live in Montreal & there is not much info available. Where & what website do you get all your info so I can make a good decision. My biggest fear on doing the allo is all the side effects. I was lucky the original chemo was side effect-free but preparation to the auto t/plant was worse lots of side effects after that I am still dealing with. My sister was a perfect HLA match, so I am good donor-wise. What kind of things can go wrong w/GVHD? I read that a donors cells can attack other organs that do not have cancer or anything else wrong w/them. So this is my dilemna ...to do or not to do allo t/plant. I wish you the best in your recovery & look forward to your updates. Thank you
Gloria, I can completely sympathize with your dilemma. The information on the internet about allo transplant is not very useful especially since everyone's situation is so different. Yes there definitely are side effects and GVHD is an issue but the medications and techniques for controlling it are getting better all the time and it can be managed. With a sibling donor the mortality is nowhere near the 50% you were quoted. Since you are in remission now you probably at least have time to sit back and evaluate the situation and there are plenty of drug options. Talk to as many experts as you can, get a second, third opinion. However even then I doubt you will get a consensus opinion. It is a tough call. In the end you will have to get as much info as you possibly can and then trust your instinct. Then don't look back.
Hi Dr. Goodman -- I hope that things continue to go well for you and I wish you all the best with success with this. I hope that it gives you many, many years of treatment-free remission.
Bonjour Arnie,
I am so happy that you are at your home after such difficult moments. Nothing to add to the previous reveiws except that I would like so much you could be fine in the coming months.
stéphane
Thank you Dr. Goodman. I look forward to hearing your updates on how you are doing after your allo transplant. Yes, it is a big decision to make especially when I am "in remission" and don't wannt to mess with a good thing....but remission can be weeks, months or years. I guess I have to act now since I won the first battle but not the war. Take good care and we will fight the fight. Best regards.
Great I hope everything goes well. I would like to know if anyone suffers from anxiety attacks as I have been having the last few months.
Arnie, it's wonderful to hear of your progress!
Congratulations!
You wrote; No matter how it turns out, I have done everything that I can do to give myself my best shot.
That is exactly how I feel after making the decision to go ahead with an allo transplant.
I am +5 days after recieving my HLA matched sisters cells in an allogenic transplant at Karolinska University Hospital in Stockholm, Sweden.
Since I am GEP80 highrisk and also have del17p and started to relapse 1,5 years after an auto transplant, while on Velcade maintenance, I felt I had few options. I did an "midi" allo since my doctors suggested this. I also took a chance and wrote to Dr Kroeger in Germany to get his opinion on my case and he also suggested a midi variant. The mortality rate in Kroegers latest study was approx 6% and at Huddinge 7% was mentioned. I think these figures differs between transplants centers.
I am looking forward to hear more of your story!
Asaryden,
I am just wondering if you ended up using ATG for your transplant. That is great that Dr. Kroger took the time to respond to you. He really puts out some great research on allos. It is unfortunate that most myeloma doctors here in the US do not seem capable of doing anything but writing "Revlimid 25 mg" on a prescription card.
I continue to have no therapy related side effects. I am now more than 16 months out from my allo. It was the best decision I could have made. I hope yours goes as well as mine has.
All positive energy being sent your way from the US.
Mark
Thank you Mark!
Dr Kroeger did recommend ATG but the practice at Karolinska (in Huddinge) is to only use it with unrelated donors, so no I did not get it. I was a bit disappointed.
I used treosulfan and fludarabine as conditioning regimen. I am feeling quite good right now but I know a lot can happen in the next days, weeks, months.
As I said before, your story is an inspiration!
Åsa Rydén
Asa
good luck with the transplant, we are going down the same road. Now day 44 with a small amount of GVD with some skin itching. Otherwise well. It does seem that in Europe there is more aggressive use of the allo transplant. Just my impression.
Congrats on your decision and it's success, Dr Goodman... I wish you the best.
I too had (have?) skin itch, and it can make you crazy... you'd think with all the bad side-effect possibilities, itch would be a go-to, eh? It was worse than my neuropathy, nausea.
Anyhow... see if you can find a cream having sea buckthorn and honey. Seriously. I have hundreds of dollars worth of medicated creams and salves here, but none of them worked anywhere near as well as a $20 tube of "Bee by the sea" cream... and in fact, by the time I was done one tube, the itch was much reduced on a permanent basis.
It might work for you too
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