Arnie's Rebounding World: The Donor Transplant, The First 100 Days And Beyond
One of the big things that you hear about with any transplant, but especially with the allogeneic (donor transplant), is that it is critical to get past the first 100 days.
Whenever friends would ask after my transplant when I could relax a little about going out, eating, and life in general, the answer was always, “After the first 100 days.”
I recently passed the famous 100-day mark.
I have to tell you, I didn’t hear any trumpets go off or notice any marching bands. It turns out, in fact, that for the donor transplant, the 100 day axiom is a bit of hype.
For the last couple of months, I have been on the immunosuppressive drugs Rapamune (sirolimus or rapamycin) and CellCept (mycophenolate mofetil) as well as prednisone to prevent rejection and graft-versus-host disease (GVHD), a common donor transplant-related complication in which the donor cells recognize the patient’s cells as “foreign” and attack them.
I started Kyprolis (carfilzomib) about a month earlier both for the anti-myeloma as well as the anti-GVHD effect.
Life actually was looking pretty good. I was feeling well and had returned to a lot of normal activities, such as going out with friends, walking, and riding my bike.
I was tapering my prednisone dose and was almost off completely. I was cautioned mainly to avoid crowds, to be very careful not to be around people who are sick, and to continue to be careful with what I eat. Going out to dinner was fine as long as it was not crowded and was clean. Movies in the middle of the day were OK.
On day 100, I had a full set of labs, including all my transplant and myeloma labs, and I and went to see Dr. Anasetti, my transplant doctor at Moffitt.
This is it: day 100. I’m good, right? I knew, of course, that I was still a long way from being in the clear, but I was looking forward to at least being cut loose a little.
Well, not really. Dr. Anasetti said that the 100-day mark really has more historical significance.
If I had been a donor patient at another transplant center or a Moffitt patient who lived a long way from the hospital, day 100 would be the day, traditionally, that I would be allowed to return home. But it turns out that not very much else changes.
As Dr. Anasetti explained the curve for complications, something bad happening after the transplant, especially a serious infection, doesn’t really start to drop off for about 6 months. And a minor cold can easily turn into a serious case of pneumonia.
So it’s pretty much business as usual for me.
I continue to go out but remain very cautious about being around crowds.
I had hoped to be able to get on an airplane and go on some college-hunting trips with my daughter. I’m going to have to wait a few more months on that.
I still won’t eat salad at a restaurant.
Having said all that, I as well as my family and doctors are really pleased at where I am at. To be honest, no one seemed to give me much of a chance to even get to this point.
That brings me to the next question: What about my multiple myeloma?
When I was trying to make the decision about the donor transplant, I would always tell people there are really two sets of questions.
One is: Will I survive the transplant process and not be one of the 10 percent to 20 percent who die of complications? And can I survive without being miserable from GVHD?
The second one is: Will the donor transplant help my multiple myeloma? Will I gain any meaningful disease control? For how long: six months, a year, five years, permanently?
While I cannot say for certain, and lots can still go wrong (including chronic GVHD), I am feeling pretty good about the first question. There is no question that I am happy about my decision, and I feel like I can weather whatever the transplant process throws at me.
A lot of people have been asking about the second question. What about my multiple myeloma? Well the jury is still out.
Right now at 100 days and after 2 cycles of Kyprolis, my M-spike remains 0.1. Pretty much where I was at after chemo and just before the transplant. Not bad, and believe me, I’ll take it if it stays there.
But as is all too often the case with multiple myeloma, who knows? Will it go down to zero? Will it stay down for a few months and than start to become active and creep up? Will it stay there for years?
I’m just trying to take it one day at a time and to take some comfort in knowing I have and will continue to do everything I can do.
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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Thanks for your info Arnie. I have been holding off my allo until after the holidays. I go for my appt. with my transplant physician Jan 7. I already have my donor, they are just waiting on me. Those are the same two questions that I have in my mind but I know everyone reacts differently . Good luck on your next 100 days and may God Bless you.
Dear Arnie,
I'm rooting for you, and I look forward to reading your articles for many years to come.
Best of luck.
Lin
Arnie,
Your emotions, questions and concerns mirror my own....my second and last transplant was 6 months ago...my own cells were used and I achieved remission status 2 months later. I am 47 and consider myself a newby,
because my battle is 13 months old....I will continue treatment for the next three years. Now I am working on restrengthening weakened muscles and a few other issues..... Research and following other survivor's experiences is helpful.
I too am rooting for you....
Sandra
Arnie, you're cool and an inspiration for me and my family.
Thanks a lot for your column and sharing thoughts with us.
Best for you, Tom 39, myeloma patient from Gemany
Dear Arnie, I'm very glad to get your update today, and hear you continue to improve. I bet the answer to your second question is going to be positive for many years. May you enjoy a wonderful holiday season with your family. All the best to you! Jan
I think there's extra luck for you Arnold. You posted on 12-12-12!
I often think about you and your current situation.
Thank you so much for sharing.
Take care Arnold and enjoy a germ free Christmas. Stann
I also echo Tom's comment..for some reason I also find Arnold to be cool. Great pic, friendly and calm.
I'm happily married-ha.
Queue trumpets: Dun ta dun dun!!
Queue flying squirrel: Whooooooosssssshhhhhhh
Queue DVD of Fractured Fairy Tales: ENJOY!
HAPPY HOLIDAYS!
Steve
Thanks everyone for you thoughts and good wishes, especially the part about being cool. Now if only my wife and kids thought so. Happy holidays!
Heres hoping to the myeloma being controlled, the GVHD being minimal and enjoying life for at least the next 20 years. I am now 20 months post allo with no paraprotein detected.
Have a happy germ free holiday.
Dear Arnie, I´m also happy to hear you´re doing fine!
I´m on day 93 after my allogeneic transplant and also doing fine. No GVHD at all but then my sister was my donator so the odds were better for no GVHD. I have almost stopped my GVHD prevention.
My situation is similar to yours in that my disease, monitored after 1 and 2 months, was the same as before my allo; lambda light chains at a very low level. I will discuss treatment with DLI (donor lymphocyte infusion) with my doctor on Monday. I know that did the trick for you LibbyC. On what day did you recieve DLI
Åsa Rydén
Hi Asa,
I am so glad to hear that all is going well. I had a minor skin rash and sore gums for about a month after I discontinued my immunosuppression. That was the last my having any GVHD. It has been about 18 months since my allo. It was the best decision I ever made. The only tough part is trying to figure out what to give my Donor at Christmas!!!!
All positive vibes coming your way from the US.
Mark
thanks for the good vibes and good reports from the allo patients. Asa we are on similar a course. As I mentioned my doctors are trying carfizomib to try to get a complete response. Tolerated well so far. We have not discussed DLI yet but certainly an option down the road.
Hi Asa,
I had my allo on 29th April and the DLI on 26th July (~90 days). I was completely off immunosuppressors for 2 weeks prior to the infusion. It took another 2 weeks after the DLI to first show signs of skin GVHD (really minor).
Hope you keep progressing well.
Libby
Sounds like you are doing GREAT! 0.1 before the transplant? That's great, too. Thought you were a lot worse-off than that. Not sure I would have gone through with it. Good for you, Arnie! I'm right behind you, taking notes...
Pat, everyone told me that to have any chance of success with allo I needed to go into it with minimal disease. I was very fortunate to get a good response to several cycles high dose chemo with VTD-PACE to drive my m spike down before going into the transplant.
Arnold,
I am several years down the road from you. I had my Allo in the spring of 2005. I have never regretted a single second of my decision to have the transplant. I lost my tear ducts from GVHD but live very well with eye drops. I have two free light tests a year to keep an account of my progress .... so far so good. When I reached five years the doc's said I had a good chance of reaching ten and beyond.
Good luck and Merry Christmas.
Richard, i love hearing stories like yours, warms my heart. thanks
Hello, and congratulations on your progress.I was curious to ask why you choose the "Allo" instead of the "Auto" transplant..Best wishes Ralph
Ralph, i had already had 2 auto transplants, allo transplant was a last resort.
Dear Arnie, today is Epiphany, and I send you New Year greetings! May you continue to improve, and especially enjoy life to the fullest with your family and friends. I just reviewed again all your posts about your allo process again, and all the diverse responses. It is very informative. Thank you!
Just last week my kappa light chains doubled, less than a year after my auto SCT (I have oligosecretory MM with no M protein). This is despite Revlimid maintenance. So next week I will have a PET/CT scan, bone marrow biopsy and more labs, while continuing my OB/GYN practice. As I see it, at this juncture we have three options: more combination novel agent and other drug therapy, clinical trials (like elotuzumab), or repeat auto or a type of allo therapy. It is strange to feel quite well, and yet know that more action is required.
So I am back to researching these options and obtaining expert opinions. I have one brother who has a 25% chance of being a match for an allo, but as I read it, an unrelated match is equivalent in terms of an allo success, correct? I am of course hesitant to seek the last option, but I am open to any guidance. In any case, my approach continues to be holistic: daily meditation, weekly acupuncture, energy work, and spiritual practice. I find life ever more precious, and live fully every day. I like to say that we do not choose our challenges, only how we respond to them.
May all of us MM patients seek comfort in fully living in the present moment.
Thanks Jan, Happy new year to you as well. Sorry to hear your numbers are going up. It is a tough decision. It sounds like you still have some good drug options available. As you I am sure know second auto is most useful when you had a fairly long response to the first one. As I said the jury is still out for me as far as long term response to the allo.
Yes I believe the results are just as good with matched unrelated donor but the risk is somewhat higher due to increased GVHD. Happy to talk any time.
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