Comments on: Study Reveals Common Features Of Long-Term Surviving Multiple Myeloma Patients (EHA 2010)

By: suzierose

suzierose — Wed, 02 Nov 2011 16:01:37 +0000

David

You suggest that not having chromosomal damage should be a reason to avoid hi-dose Melphan as it can select out the most resistant cells, along with potential for leukemia.

Are you aware, that for individuals WITH chromosomal damages, ASCT, is not recommended, according to the literature?

http://www.nature.com/bmt/journal/v36/n9/full/1705131a.html

By: David A.

David A. — Wed, 02 Nov 2011 09:24:26 +0000

For those of you who have been slated for transplant, find out from your docs if you have chromozomal damage. Not all MM payient have chromozome damage inititially. I know from the experience of a family member.If you don’t have chromozomal damage, avoid the transplant especially if they use high dose Melphalan. This drug will result in secondary leukemia or some other chromozomal damage and ruin your survival chances. Some people have very good showing with Velcade and Dexamethazone as maintenance.

If you have chromozomal damage, well, I guess you can’t do futher damage but avoid Melphaln and BCNU in the transplant if you can convince your Docs.

By: Afrika

Afrika — Tue, 01 Nov 2011 23:49:51 +0000

I’m praying for you all. My dad was diagnosed in June 2011. His numbers “look great” but he is still supposed to get the transplant later. Thank you all for sharing. “They overcame by the blood of the Lamb and the word of their testimony.”

By: Carolyn

Carolyn — Sat, 15 Oct 2011 17:38:45 +0000

Thank you all so much for your comments! My husband has been diagnosed with Myleoma. He started out at 200 and is now down to a 6. He is on maintiance chemo until we see a transplant specialist. After reading your comments maybe I can calm down and stop crying. He is having a tough day.

By: Sarah

Sarah — Mon, 30 Aug 2010 18:37:49 +0000

I was diagnosed with at age 55 in 2/98, had Cytoxan, then VAD, then an allogeneic transplant in 11/98, bringing a good partial remission. I went out of this remission 2/2001 and took thalidomide and bone pain radiation for 11 months, again relapsing in 3/2002 I chose no more treatment after researching my options with a doc. In 10/2002 I experienced a “spontaneous remission” and have been myeloma free since then. So, I am an 11 year survivor of myeloma. Life is good!

By: Joanne Carillo

Joanne Carillo — Fri, 27 Aug 2010 20:25:28 +0000

My husband came down with severe Multiple Myeloma in 1996 and they gave him an estimate of only a few years. He had back to back stem cell transplants at 53 years old. He stayed in remission with little site effects till Sept. 2007 when it reoccurred. He is now off of Revlimid which he was on since Sept 2007 had chemo and is in remission at 68 years old.

By: maureen napoli

maureen napoli — Wed, 21 Jul 2010 07:36:31 +0000

My husband has non secretory multiple myeloma & after stem cell transplant, thalidomide, predisalone, & zometa monthly, which has kept his count at 6, for 3 years & 6 months, his count is at 19 now & he has just gone on revlimid with dex, so we are hoping he responds. Has anyone with non secretory myeloma had these treatments? Maureen