[Mark]

Re: Multiple myeloma specialist in southern California?

by Mark on Mon Mar 25, 2013 7:07 pm

Hi Dan D,

Could you show me some scientific literature that backs up the comment:

"in fact, can devastate the supporting cells for the bone marrow."

As you know, patients who do allogeneic stem cell transplants usually use high dose chemo­therapy and can be cured of their cancer by the donor's immune system. If the high-dose therapy is "devastating" to the supporting cells of the bone marrow, why is it that the donor immune system is able hold a patient's remission without toxic drugs like Revlimid and steroids?

Are any of Berenson's patients able to hold remission as long as patients who do allogeneic transplants without the aid of a myelosuppressive drug like Revlimid and steroids? Long-term steroid use is rarely "healthy" for you.

I have not used a steroid since December of 2010 when I did the last of 4 Induction cycles. I have taken no myeloma drugs since May 2011. I think that is lot less toxic than never ending cycles of Revlimid and steroids.

Mark

[torimooney]

Re: Multiple myeloma specialist in southern California?

by torimooney on Mon Mar 25, 2013 7:35 pm

Dr. Berenson works with another oncologist in the Encinitas office on clinical studies, and Dr Berenson referred me to that doctor. Upon Dr Berenson's recommendation, I treated with that doctor from June to October . I couldn't deal with the doctor, however. Bad personality match, etc. So I followed my heart and switched to Dr Sinclair.

Dr. Sincliar no longer works out of Encinitas and is in La Jolla. For me, Dr Sinclair is definitely worth the extra 15 minute drive. I am still able to get my chemo in Encinitas. Both the Encinitas office and the La Jolla office are now "C Care" and no longer Pacific Oncology. I have an excellent working relationship with the Encintas chemo nurses and nurse practitioners and Dr. Sinclair and Dr. Berenson. All are on the same page now and I couldn't have a better team.

[Dan D]

Re: Multiple myeloma specialist in southern California?

by Dan D on Thu Mar 28, 2013 3:21 pm

To address Mark's point. I agree with you: if the autologous or allogeneic stem cell transplant "takes" - as they did for you - the concern I have raised is not valid. And, by the way, I view allos even more favorably, in that the donor cells truly are normal. And of course I know that there are many successful transplant recipients, in which their bone marrow (meaning cell number and cell type) recovers nearly completely (if not completely).

My concern is the consequences in patients in whom the autologous stem cell transplant fails. And my understanding – and correct me if I am wrong – is that for the majority of patients, a stem cell transplant does not improve numbers, and that in these patients, is it not typical to see general bone marrow suppression: chronic anemia, and chronic reduction of white blood cell, etc. This understanding comes from listening to interviews and lectures by oncologists, including Berenson. It also comes from looking at the comments and blood test results of other multiple myeloma patients and other people on this website who have experienced transplant failures.

I just think that people should not regard a transplant as some type of high-tech treatment that will ensure a long remission. It is raw treatment that is designed to kill all dividing cells. But if cells are not dividing or have developed resistance, it will not work. I would like to see more "informed consent".

BUT, as mentioned above, I do view allos differently given the graft-versus-host effect, that if tweaked just right, is curative without adverse effects. But allos are higher risk, and as I recall, you are one of the lucky allo recipients who did not experience any major issues. What is your understanding for the majority of allo recipients? How do they fare?

And also, I agree that endless cycles of steroids and Revlimid is a huge issue. But this is also why Berenson also believes in minimizing the dose of such drugs, whereas my current oncologist has the opposite view.

There is no simple answer or single course of treatment, and I wish there was.