Hi Roxie-

I am not an onc so take my opinion accordingly.

What stage is your husband's mm? Stage at diagnosis is an important factor in determining prognosis.

Without knowing any details I would say, yes, yes, yes, a autologus transplant followed by an allo transplant is extremely aggresive therapy. You and your husband are right to be shocked by this recommendation.

I have not read any studies which indicate anything about 20 year survival.

I have read several studies recently that point to the benefits of low dose therapies in combination such as revlimid, dexamethasone, velcade and thalidomide.

Peripheral bone marrow transplants yield complete remissions for only a small minoriity or patients- and will cause short and long term side effects in almost all.

As the saying goes, the devil is in the details. Yes, there are a small minority of mmers who will achieve long term complete remissions. However what is not discussed are the vast majority of mmers who achieve only short complete remissions, partial remissions or no remission at all. All the while suffering from debilitating side effects.

And I am only referring to auto transplants- the risks and side effects are greater when talking about allo transplants.

Please get a second opinion from a place like the Mayo clinic or from Dana Farber in Boston. I believe both institutions have done work in low dose therapies. If you can't get to those places, set up a phone consult with the mm specialist Dr. Brian Durie- someone on this list may have his number.

Please ask any and all questions- here on the list and to your oncs.

One more thought- is there a Dr. Hussein at Moffitt?  Dr. Hussein is a mm specialist who used to work at the Cleveland Clinic and he specializes in mm management- if he works at Moffitt try to get a second opinion from him.  JMO 

thanks and take it easy-

David

Hi, Roxie.

I agree with everything David has said. I've also heard very good things about Dr. Hussein at Moffitt from one of his patients. If you want to consult with Dr. Durie, director of the International Myeloma Foundation, his number is 310.423.0702. I believe that his telephone consultations cost $250. Cathy

 

 

 

wishing you growth and transformation as you heal I am an irregular emailer

I had an autologous (my own) stem cell transplant at the Mayo Clinic in 1/2001.  For the next 17 months I required no drugs over than Aredia (IV bisphosphonate).  When my counts started going up after 17 months I went on 150 mg thalidomide (plus I took 500 mg curcumin).  My counts went down to almost normal for the next 2 1/2 years.  When they started going up again I had to switch to 15 mg Revlimid plus 20 mg dexamethasone.

An allo transplant gives you a shot at a cure but there is still a 10-30% mortality in the first year.  Given more time, I do believe they will get the allo to have acceptable numbers.  If you decide to have an allo or mini allo, Fred Hutchinson in Seattle has by far the most experience and therefore should provide the best odds.

Terry