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

Maintenance or not before delayed ASCT?

by DexMed on Tue May 19, 2015 2:26 am

I am 67. I finished CyBorD [cyclophosphamide, Velcade, dexamethasone] induction, about to harvest stem cells in a week. Induction was stopped after 3 cycles instead of original planned 4 cycles due to near complete remission (M protein zero and bone marrow plasma cell percentage reduction from 33 to less than 1) and start of mild peripheral neuropathy.

If I need to delay my autologous stem cell transplant (ASCT) by 6 to 10 months, do I need to go on maintenance with 10 mg Revlimid as currently recommended? Or go on NO maintenance until progression and do ASCT soon after?

If I choose not to do maintenance, any idea how long the current remission May last? Have any others tried to go drug-free just after induction?
Last edited by DexMed on Wed May 20, 2015 11:27 am, edited 1 time in total.

DexMed
Name: GV
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 2010 Smoldering. Symptomatic 9/2014
Age at diagnosis: 62

Re: Maintenance or not before delayed ASCT

by Multibilly on Tue May 19, 2015 8:07 am

GV,

That's an interesting question. Namely, does one go on to maintenance prior to doing a transplant, when you know it is only a few months down the road and there many not necessarily be the usual situation of disease progression that would signal the need for a delayed transplant (or reinstating drug treatment)?

Are you worried about the side effects of 10mg Revlimid for 6+ months or is there another reason you are considering not doing maintenance?

I don't think anybody can predict how long your current "remission" will last. It could be months or it could be years. Every multiple myeloma patient is a snow flake.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Maintenance or not before delayed ASCT?

by DexMed on Tue May 19, 2015 8:46 am

Thanks, MultibiIlly, for your quick response, which helped me clarify my reasons.

During induction, the side effects were quite challenging. Also, Velcade and dex caused mild neuropathy. I have had diabetes for a long time, was controlled until recently.

I do not qualify for financial assistance, yet. On Medicare, the first month of Revlimid will put me past the donut hole, so $4700 plus 5 percent of $13000 per month ($650). About $9k in current calendar year. Another myeloma patient I know had to stop 5 mg Revlimid maintenance after few months due to very severe rash.

Perhaps there is some other maintenance option besides Velcade or Revlimid? Kyprolis is an injection, so Medicare covers it. Low-dose dex? Going drug free? Even if I relapse and follow with a delayed ASCT, the outcome may not be much different.

DexMed
Name: GV
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 2010 Smoldering. Symptomatic 9/2014
Age at diagnosis: 62


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