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Seeking advice - newly diagnosed
Hello Anyone – I’m brand new to all of this. Several weeks ago younger brother 45yrs w/ 5 & 7 year old children & wife was diagnosed with multiple myeloma (key factors are deletion of P17 & P13 and P53 is ‘turned off’). appointment at Dana Farber on Friday 3/30/12 doctor said allogeniec stem cell transplant is most probable for success, and autologous less appropriate given severity and progression of situation. Questions: Wondering about life after allogeniec procedure. What will Paul be able to do/not able to do for a year or so? Drive himself to weekly appts in Boston from 3 hours away? Has anyone undergone this and can offer advice? Also, after appointment at Dana Farber, can/should 2nd opinion be sought – they said good people in Seattle, WA/NY Sloan Kittery. Can 2nd opinion be done electronically w/out flying out to Seattle from CT?
Re: Seeking advice - newly diagnosed
I am in the same age range group as your Brother and I did an Allo as part of my upfront therapy. I am a little over 10 months out and I am doing great. I do most everything a normal person does, I just have to be extremely careful to avoid infections. For example, I do not fly and I used to take the train to work. I am about 3 months away from being able to do those as safely as anyone else. I jogged a couple of miles this morning.
I do not go to Dana Farber, but apparently they are awesome at Allo transplants. One of the drugs we use for Myeloma therapy, Velcade (Bortezomib), they have been using in the Allo process to prevent GVHD. When patients take Velcade while undergoing Allo, the donor immune system reconstitutes faster. Allos used to be dangerous procedures, but check out how great Dana Farber is doing in this Clinical trial with Velcade for the reasons I mentioned above.
"At 1-year, the nonrelapse mortality was zero..."
http://www.ncbi.nlm.nih.gov/pubmed/19713456
That is for unmatched transplants. That tells me they are top notch when it comes to Allo transplants. Allo is the only possible cure for Myeloma and they work best when they are done in first remission. I am sure they will tell you the same things. Here is another thread where a few of us were discussing Allo transplant with another patient.
https://myelomabeacon.org/forum/needing-information-t901.html
Just as a side note, I am not sure if you are a match, but a Female donor to a Male recipient has the lowest chance of relapse in Allo transplants. Hopefully you will be a match. William Bensinger in Seattle and Sloan Kettering (Dr. Sergio Giralt) in NY are also top flight Institutions for Allo transplant.
Best of luck. Your Brother is in the best of hands and Dana Farber and I am sure he will have a great outcome.
Mark
I do not go to Dana Farber, but apparently they are awesome at Allo transplants. One of the drugs we use for Myeloma therapy, Velcade (Bortezomib), they have been using in the Allo process to prevent GVHD. When patients take Velcade while undergoing Allo, the donor immune system reconstitutes faster. Allos used to be dangerous procedures, but check out how great Dana Farber is doing in this Clinical trial with Velcade for the reasons I mentioned above.
"At 1-year, the nonrelapse mortality was zero..."
http://www.ncbi.nlm.nih.gov/pubmed/19713456
That is for unmatched transplants. That tells me they are top notch when it comes to Allo transplants. Allo is the only possible cure for Myeloma and they work best when they are done in first remission. I am sure they will tell you the same things. Here is another thread where a few of us were discussing Allo transplant with another patient.
https://myelomabeacon.org/forum/needing-information-t901.html
Just as a side note, I am not sure if you are a match, but a Female donor to a Male recipient has the lowest chance of relapse in Allo transplants. Hopefully you will be a match. William Bensinger in Seattle and Sloan Kettering (Dr. Sergio Giralt) in NY are also top flight Institutions for Allo transplant.
Best of luck. Your Brother is in the best of hands and Dana Farber and I am sure he will have a great outcome.
Mark
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Mark
Re: Seeking advice - newly diagnosed
Thank you for your information, Mark, and your encouragement and time. We have checked out your link on the discussion. It is quite sobering. Our brother, the youngest of 6 siblings, has 5 of us living, and we are hoping that one of us will be a match once he makes the decision to go ahead with the allo transplant. We have so much to learn. Our brother runs, golfs, and also skis with his children and wife, and wants to continue living life large. We are glad to hear that you are doing so well. The first couple of months must be tremendously challenging, and we are trying to line up our support to prepare for what this journey really entails. We appreciate all of this information and any other information you wish to share.
Thank you sincerely from group66.
Thank you sincerely from group66.
Re: Seeking advice - newly diagnosed
Mark,
I'll be flying to New Orleans next week. I can't give you any numbers or anything like that, but I feel fairly good and use pain pills to control pain. I didn't realize flying was risky. Can you give me more info. to protect myself?
Kathryn
I'll be flying to New Orleans next week. I can't give you any numbers or anything like that, but I feel fairly good and use pain pills to control pain. I didn't realize flying was risky. Can you give me more info. to protect myself?
Kathryn
Re: Seeking advice - newly diagnosed
Kathryn,
I hope you are doing well. I have to take special precautions because I used more Chemo than most patients do when doing their Allos. I truly have an immune system that is similar to a 10 month old child. I read some Transplant centers have patients get their childhood vaccines over again after Autos and some do not. I have definitely lost all of mine. All patients are different. In the other thread, a lady that did an Allo did not use as much Chemo and she was flying off for vacation a few months after her Allo. It all depends on how your immune system is doing after the transplant. If your Doctor did not say anything to you about it, you are probably good to go. I hope this trip is for a vacation. Nobody deserves a fun trip more than us Myeloma patients!
Mark
I hope you are doing well. I have to take special precautions because I used more Chemo than most patients do when doing their Allos. I truly have an immune system that is similar to a 10 month old child. I read some Transplant centers have patients get their childhood vaccines over again after Autos and some do not. I have definitely lost all of mine. All patients are different. In the other thread, a lady that did an Allo did not use as much Chemo and she was flying off for vacation a few months after her Allo. It all depends on how your immune system is doing after the transplant. If your Doctor did not say anything to you about it, you are probably good to go. I hope this trip is for a vacation. Nobody deserves a fun trip more than us Myeloma patients!
Mark
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Mark
Re: Seeking advice - newly diagnosed
Mark,
I think I'm in fairly good condition, but just in case, I'll call my oncologist. Thanks for your advice.
And yes, it's a vacation and I deserver it!
Kathryn
I think I'm in fairly good condition, but just in case, I'll call my oncologist. Thanks for your advice.
And yes, it's a vacation and I deserver it!
Kathryn
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