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So an allo transplant it is
I cant believe I'm even writing this, but it def looks based on my age, physical fit, type of myeloma and how I responded, I am a perfect candidate for it. Probably doing it around January and am scared s--tless but after hearing that in my case, a cure has a higher percentage then mortality, I think its a no brainer.
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Guest1
Re: So an allo transplant it is
All the best for the allo. Its 2 1/2 years since I had mine.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: So an allo transplant it is
I must say I am extremely hesistant to go thru with it. You have to understand, how "normal" my life is right now and to have to make this decision while I feel great and have a great quality of life is truly an odd feeling for me. But with that said, I am hoping that being I have not been treated with an chemo since my last Auto SCT in March 2011, my body will be able to take to the donor transplant much easier than being treated.
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Guest1
Re: So an allo transplant it is
Hi Guest1,
My allo was a last resort for me. I had chemo refractory myeloma that was relentless in its growth. I don't know what my cytogenetics were/are but my gut feeling is that I was high risk. Some of the other allo beacon members have chosen to have an allo because they feel it was the best option not because it was their only option. Perhaps you could address questions to them if you are having doubts.
All the best,
Libby
My allo was a last resort for me. I had chemo refractory myeloma that was relentless in its growth. I don't know what my cytogenetics were/are but my gut feeling is that I was high risk. Some of the other allo beacon members have chosen to have an allo because they feel it was the best option not because it was their only option. Perhaps you could address questions to them if you are having doubts.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: So an allo transplant it is
Yeah I'm hoping others read this and can chime in. I am not refractory or anything but am slowly slowly relapsing. The match is my dad, so he is a haplo match. Ill never quite understand how a haplo match, which is like a 5 out of 10, is better than a unrelated 9 out of 10 or something.
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Guest1
Re: So an allo transplant it is
Hi Guest1,
I had an allo a year ago in Sweden. My one and only sister was a match. It was a difficult decision but since I am high risk and relapsed 18 months after my auto transplant while on Velcade maintenance I felt an allo would be my best and perhaps only chance for a longer remission. I was really scared of getting GVHD but I ended up having almost none of that.
I have not reached CR in spite of receiving donor lymphocyte infusions (DLI) so now I am on Revlimid 10 mg and prednisolone. There hasn´t been a drop in my numbers yet after starting Revlimid (1,5 cycles) so I keep my fingers crossed!
My doctor and I have talked about a second allo later on. I suggested a haplo (I have to fit sons ; 21 and 23 years old) but my doctor would rather do a second one with my sisters cells or use an unrelated donor so it´s interesting to hear that your doctor suggests a haplo.
Best of luck with your decision,
Åsa
I had an allo a year ago in Sweden. My one and only sister was a match. It was a difficult decision but since I am high risk and relapsed 18 months after my auto transplant while on Velcade maintenance I felt an allo would be my best and perhaps only chance for a longer remission. I was really scared of getting GVHD but I ended up having almost none of that.
I have not reached CR in spite of receiving donor lymphocyte infusions (DLI) so now I am on Revlimid 10 mg and prednisolone. There hasn´t been a drop in my numbers yet after starting Revlimid (1,5 cycles) so I keep my fingers crossed!
My doctor and I have talked about a second allo later on. I suggested a haplo (I have to fit sons ; 21 and 23 years old) but my doctor would rather do a second one with my sisters cells or use an unrelated donor so it´s interesting to hear that your doctor suggests a haplo.
Best of luck with your decision,
Åsa
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: So an allo transplant it is
I am going to get a 2nd opinion at Sloan Kettering in NYC about this whole Allo thing.
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Guest1
Re: So an allo transplant it is
Guest 1,
I know exactly how you feel, I was there a year ago. I had double transplants in 2012. An Auto in July and an Allo in November. Wherever my Donor is, I owe him so much. My myeloma was aggressive, I did Rev and Dex for three months, but it didn't kick it out. I went to a Myeloma Specialist, the best decision I could have made.
I believe attitude is everything. I achieved remission with the Auto, and continued on to have the Allo. I remain in remission and feel good.
Good luck to you with your decision. Remember its your body and your life, you make the decisions, no one else.
I know exactly how you feel, I was there a year ago. I had double transplants in 2012. An Auto in July and an Allo in November. Wherever my Donor is, I owe him so much. My myeloma was aggressive, I did Rev and Dex for three months, but it didn't kick it out. I went to a Myeloma Specialist, the best decision I could have made.
I believe attitude is everything. I achieved remission with the Auto, and continued on to have the Allo. I remain in remission and feel good.
Good luck to you with your decision. Remember its your body and your life, you make the decisions, no one else.
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RickK - Name: RickK
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2011
- Age at diagnosis: 53
Re: So an allo transplant it is
Well they do have donors for me, which happens to be my dad and brother. I think I am just involved in everyday life and being forced to make a big treatment decision right now is very hard. I understand that this is the ideal time to do an Allo since my Myeloma is very minimal, but I am very active and am afraid I will never ever be the same after the Allo. I'm only 35, with a wife so I have a lot to life for but a lot of worries. So, I am going to see the doctor who transplanted Robin Roberts, think is name is Giralt or Givalt, I forget. I'll let him be the one who makes the decision.
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Guest1
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