[TJ13]

Re: Is the relapse rate for myeloma really 100 percent?

by TJ13 on Sun Dec 07, 2014 1:49 pm

Mark,

Thank you for the info. The plan is for my daughter to have an allo probably sometime in January with her brother as a donor. She had DCEP and after that developed c diff and a blood infection so right now her body is pretty beat up.

Hopefully she can go through with the plan if no other complications develop.

[Ron Harvot]

Re: Is the relapse rate for myeloma really 100 percent?

by Ron Harvot on Mon Dec 08, 2014 12:39 pm

TJ13,

I am so sorry to hear of your daughter's struggles. It is highly unusual for a person that young to develop multiple myeloma. I agree with Mark and your decsion to pursue an allo transplant. That process has the highest possibility of cure for a person as young as your daughter who should have the strength to handle it.

I am somewhat suprised that they gave her DCEP. That is a protocol that that has been looked at for relapsed patients that are no longer responding to the novel agents. So I would be interested as to why they went that route.

Ron

[TJ13]

Re: Is the relapse rate for myeloma really 100 percent?

by TJ13 on Mon Dec 08, 2014 1:17 pm

They are using DCEP as a bridge to transplant. She no longer responded to Velcade, Revlimid or Kyprolis.

[Stan W.]

Re: Is the relapse rate for myeloma really 100 percent?

by Stan W. on Fri Dec 12, 2014 2:34 pm

When they say 100% relapse, does it mean a 0.01 M-spike or a slightly out of range FLC ratio?

If I can go on living a, somewhat, normal life by controlling the myeloma with a pill or two, I'd say that's good enough for me. I'm almost 61. I started treatment in Feb. 2013, in complete remission (CR) since June 2013, achieved stringent CR a little more than a year ago. No stem cell trans­plant.

But in October of 2014, my FLC ratio went out of range. So, by definition I'm no longer in sCR. So I'll take the zero M-Spike and normal kappa that puts me in CR for as long as I can.