JohnG,
That is some story. I will keep my fingers crossed that you get CR for the myeloma as well. You will also get the added benefit of the anti-myeloma drugs typically working better after an allo. There are studies showing good responses to Revlimid after allo. I am sure Pomalyst will also work well post allo since they are in the same class of drugs. You definitely deserve a nice long remission from both diseases!
Mark
Forums
Re: Allo General Questions
Hi Dana,
I know what you mean about doing the allo when you feel so well. I did my allo as inpatient so the day I was checking in for the transplant I had a big bag and my laptop. A very nice older lady that was checking in for a test asked me if I was planning on moving in. When I told her that I was going to be in for an extended stay due to a major procedure she replied that she could not believe it and that I looked like the healthiest person in the room. Classic case of looks being deceiving!
Good luck and keep us to date on how things go.
Mark
I know what you mean about doing the allo when you feel so well. I did my allo as inpatient so the day I was checking in for the transplant I had a big bag and my laptop. A very nice older lady that was checking in for a test asked me if I was planning on moving in. When I told her that I was going to be in for an extended stay due to a major procedure she replied that she could not believe it and that I looked like the healthiest person in the room. Classic case of looks being deceiving!
Good luck and keep us to date on how things go.
Mark
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Mark
Re: Allo General Questions
Thank you all for contributing. Seems like the allo is the best shot for a cure for a young guy like me.
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Cmolinaro
Re: Allo General Questions
Good Evening,
So last week, insurance approved my allo transplant and the donor search began as well. I'm just at a loss for words how I feel great, lift weights the heaviest I ever have,but am slowly on the cusp of relapsing. Along with this, I am becoming fearful of the allo complications but do realize its only temporary.
So last week, insurance approved my allo transplant and the donor search began as well. I'm just at a loss for words how I feel great, lift weights the heaviest I ever have,but am slowly on the cusp of relapsing. Along with this, I am becoming fearful of the allo complications but do realize its only temporary.
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Cmolinaro
Re: Allo General Questions
Any updated responses that anyone can contribute? I still dont know what the hell Im doing as far as allo vs therapy. I just wish I could go several years without worrying about multiple myeloma. It causes a roadblock in everything.
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CMolinaro
Re: Allo General Questions
Hi CMolinaro,
I was wondering whether you had seen the news item
Protein Biomarkers May Predict Onset Of Acute GVHD After Donor Stem Cell Transplantation
By Jessica Langholtz and Julie Shilane
Regards,
Libby
I was wondering whether you had seen the news item
Protein Biomarkers May Predict Onset Of Acute GVHD After Donor Stem Cell Transplantation
By Jessica Langholtz and Julie Shilane
Regards,
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: Allo General Questions
Why does doing an Allo seem like I'm signing up for my own suicide 
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CMolinaro1
Re: Allo General Questions
The Allo has risks but it also offers some great potential. I'm thankful that I had it.
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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: Allo General Questions
Mark wrote:
> Actually QOL is the strength of the T cell depleted according to this NIH
> published study.
>
> "Most survivors beyond 5 years had an excellent performance status
> with no difference in physical and mental health and higher HRQL scores (P
> = .02) compared with population norms. Although physical and psychologic
> symptom distress was low, those with higher symptom distress experienced
> inferior HRQL. These results show that 5 or more years after T
> cell-depleted HSCT for hematologic malignancy most individuals survive
> disease free with an excellent performance status, preserved physical and
> psychological health, and excellent HRQL."
> http://www.ncbi.nlm.nih.gov/pubmed/20302959
If you read this carefully, you will see that it considers only those who have already survived 5 years post allo transplant, and probably many more years post diagnosis. Anyone who died in the first five years, either from the disease or from the treatment or from anything else, is simply not considered. It is thus a highly biased result. If you also knew that the 5-year survivors were 95% of the treated population, then you could consider this a great result. If you knew that they were only 5% of the treated population, you would read this same paragraph very differently.
Similarly, we should be careful in interpreting the posts in forums like this from people who report that their treatment (whatever it was) was very successful. I'm very happy for those people, but we must remember that many of those whose treatments were unsuccessful are not here to post messages.
I don't mean to be too negative, but it's necessary to inject some balance in the discussion.
Best wishes,
Larry
> Actually QOL is the strength of the T cell depleted according to this NIH
> published study.
>
> "Most survivors beyond 5 years had an excellent performance status
> with no difference in physical and mental health and higher HRQL scores (P
> = .02) compared with population norms. Although physical and psychologic
> symptom distress was low, those with higher symptom distress experienced
> inferior HRQL. These results show that 5 or more years after T
> cell-depleted HSCT for hematologic malignancy most individuals survive
> disease free with an excellent performance status, preserved physical and
> psychological health, and excellent HRQL."
> http://www.ncbi.nlm.nih.gov/pubmed/20302959
If you read this carefully, you will see that it considers only those who have already survived 5 years post allo transplant, and probably many more years post diagnosis. Anyone who died in the first five years, either from the disease or from the treatment or from anything else, is simply not considered. It is thus a highly biased result. If you also knew that the 5-year survivors were 95% of the treated population, then you could consider this a great result. If you knew that they were only 5% of the treated population, you would read this same paragraph very differently.
Similarly, we should be careful in interpreting the posts in forums like this from people who report that their treatment (whatever it was) was very successful. I'm very happy for those people, but we must remember that many of those whose treatments were unsuccessful are not here to post messages.
I don't mean to be too negative, but it's necessary to inject some balance in the discussion.
Best wishes,
Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: Allo General Questions
RickK, did you run into any issues during or after the allo?
RickK wrote:
> The Allo has risks but it also offers some great potential. I'm thankful
> that I had it.
RickK wrote:
> The Allo has risks but it also offers some great potential. I'm thankful
> that I had it.
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CMolinaro1
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