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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Deletion 17p and stem cell transplants

by BehaviorQueen on Fri Nov 13, 2015 12:33 am

mrozdav wrote:
I am also a patient at Hopkins, but I decided not to participate in the MILs trial. Nevertheless, I am very interested in what happens in the trial, and so I hope you will continue to write and share details about your husband's progress. I wish him the best.

I should have more information next week when we get the results of the myeloma labs and the bone marrow biopsy done on Tuesday. So far, the results are promising. There were not enough plasma cells in the aspirate extracted a month ago to even run the FISH test.

My understanding is that the issue for him with the 17p deletion has to do with how long a remission he can expect, since 17p deletion patients may initially respond to treatment, but relapse more quickly.

When we consulted with Ken Anderson at Dana Farber this past July, he said it was "a no brainier" for us to do the ASCT with the MILS as the novel agent and Revlimid for maintenance. He was very familiar with the trial at Hopkins.

I believe that my husband will soon be on a very low dose of Revlimid as part of the maintenance program, beginning with 2.5 mg / day. My husband had an adverse reaction to the 25 mg dose of Revlimid after he had been on it for 5 cycles (this past June). He had a red rash over most of his torso and thighs that appeared suddenly, and needed a tapering dose of prednisone to get rid of. That is why the initial maintenance dose of Revlimid will be so low. At the first sign of any rash, it will be immediately discontinued.

I appreciate the support. We are just about at Day +60 and he is feeling better each day.

BQ

BehaviorQueen

Re: Deletion 17p and stem cell transplants

by Bryan M on Thu Jul 28, 2016 7:29 am

Hi,

My name is Bryan and I'm from Australia. I was diagnosed with multiple myeloma, 17p deletion (Tp53) on November 1, 2012 at the age of 65. I then went through 4 cycles of treatment which included Velcade plus stem cell harvest (enough for 3 transplants). A few weeks later I had 200 mg of melphalan followed by a transplant. In the coming months the words "complete" and "total" remission were used. It is now July 2016 and after my latest regular blood test I am still in remission and have never been on a maintenance drug.

Regards,
Bryan

Bryan M

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