[Mark]

Re: Allo General Questions

by Mark on Wed Sep 25, 2013 10:39 am

Hi LarryD,

There is nothing biased about the study. It clearly states that it is a QOL study on long term survivors of T cell depleted allos. At no point did the study authors or I imply that it was meant to discuss overall survival statistics or anything other than long term QOL of patients that did T cell depleted allos. One of the reasons forums like this exist is for patients to ask other patients about their experience. I told mine and I than showed a peer reviewed study that if you do a T cell depleted allo and become a long term survivor you are likely to have the excellent QOL I currently enjoy. Take note that in this thread another patient that never did one stated that long term QOL was poor for allo survivors and offered no peer reviewed study to back up his comment. They are the patients you have to be careful in interpreting what they say. I always back my comments up with peer reviewed studies and link them for patients to read. Peer reviewed studies off of PubMed are the best source of information on the disease IMO.

By the way, do any peer reviewed studies exist that show that patients on long term Revlimid, Velcade, Kyprolis, or Pomalyst have QOL on par with the general population? Any links to peer reviewed studies that show long term survivors of t cell depleted allos do not have good QOL? If you have some links to post it would help all of us learn. I am sure everyone is intelligent enough to read the link I provided and draw their own conclusions.

Mark

[CMolinaro1]

Re: Allo General Questions

by CMolinaro1 on Wed Sep 25, 2013 2:32 pm

Mark,

Do you have an email address that I can contact you at? I have some general questions regarding what you went thru with the Allo. Thanks!

[RickK]

Re: Allo General Questions

by RickK on Wed Sep 25, 2013 11:35 pm

The immediate post transplant was like having a very bad case of the flu for about a two weeks.
I was in the hospital for 17 days, then recovered at home for three months. I returned to full time work 3-1/2 months post transplant.

If you have questions you can email me at rickk_blog [{at}] yahoo {[dot]} com I will be happy to answer any questions you have.

[vicstir]

Re: Allo General Questions

by vicstir on Thu Jul 09, 2015 12:28 am

I was just wondering what happened with Cmolinaro1 wether they went for allo or not. If so how did it go. Perhaps some long term forumers know.

[CMolinaro1]

Re: Allo General Questions

by CMolinaro1 on Sat Sep 19, 2015 4:49 pm

Sorry, just seeing this now. I didn't go through with the allo as of yet. I lasted until this past March without treatment, but started Revlimid and dex when my light chains hit around 336. Now everything is back in the normal range.

[vicstir]

Re: Allo General Questions

by vicstir on Sat Sep 19, 2015 7:44 pm

Thanks for the update.

You said as Yet. Does that mean it is still on the cards in the future?

It seems you are travelling ok anyways. That's great!

Vicki

[Cmolinaro1]

Re: Allo General Questions

by Cmolinaro1 on Sat Sep 19, 2015 8:33 pm

Well Im still considered as being young and if I want anything close to a cure, an Allo or T Cell may be in the cards. But so far, I have nothing to worry about.

[Grant]

Re: Allo General Questions

by Grant on Mon Sep 21, 2015 3:25 pm

Hi,

I am about to go in for an allo transplant (unrelated donor) and was wondering what Mark meant by "I did a partially T cell depleted allo with myeloablative conditioning"? Never heard of a T cell depleted allo or myeloablative conditioning ...

Ta

Grant

[Tracy J]

Re: Allo General Questions

by Tracy J on Mon Sep 21, 2015 4:02 pm

Grant,

Where are you having your allo done?

Tracy

[Grant]

Re: Allo General Questions

by Grant on Tue Sep 22, 2015 4:43 am

Hi Tracy,

Cape Town South Africa, at Constantiaberg Hospital.

Grant