[Mark]

Re: Trip to Chicago for a second opinion

by Mark on Fri May 09, 2014 7:26 pm

Great post, IvanM

Younger patients need to realize that myeloma is a disease of the elderly and that most of what they read relates to the average patient that is late 60's/early 70's. For them, a 10 year overall survival is good. For younger patients like us, it is terrible IMO. It was actually an easy decision for me to do the allo in first complete response. The alternative path of never ending cycles of drugs/side effects did not sound appealing to me at all.

Allogeneic stem cell transplants are typically only considered curative if done in first CR. There are some examples of patients that are cured by an allo after they have relapsed. Well known myeloma patient advocate Jack Aiello is an example, but the chances of an allo producing a long term remission for a relapsed myeloma patient are only 10-20 percent.

You are correct that most studies for new therapies exclude allo patients. That is another reason why it is wise to do one if you are considering one before you are exposed to/develope resistance to other myeloma therapies. I did not use lenalidomide [Revlimid] prior to transplant because it works so well after an allo. I am very fortunate to have a skilled allo doctor that thinks long term.

I would also note there is no new myeloma therapy that I am aware of that is far along in development that is considered a potential cure for myeloma like an allo transplant is. Blood cancer patients are typically cured by the initial therapy they do after being diagnosed. When the docs talk about potentially finding curative therapy other than early allo transplant, I believe they are talking about newly diagnosed patients in the future, not currently relapsed/heavily pretreated patients.

I did not want to give up my one chance of being cured of this disease because I was optimistic a curative therapy for relapsed patients would be developed in the next 5 years or so.

Going from a disease that the only potential cure is an early allo to one that relapsed patients have a reasonable chance of being cured would be a gigantic leap forward.

Mark