[gardengirl]

Length of first remission with or without SCT

by gardengirl on Wed Mar 18, 2015 10:56 am

I was told by the specialist that the first remission will be the longest. He is recommending upfront stem cell transplantation (SCT) to lengthen the first remission.

I would appreciate hearing how long your first remission was/is and whether you had SCT or not.

Thank you!!

[Terrij]

Re: Length of first remission with or without SCT

by Terrij on Wed Mar 18, 2015 11:09 am

Our daughter, diagnosed at 32, had 4 months induction with Velcade and dex, which brought her to complete remission (CR). She had a SCT from which she was still in CR. Maintenance with Revlimid followed, but she relapsed 15 months after her SCT.

[NStewart]

Re: Length of first remission with or without SCT

by NStewart on Thu Mar 19, 2015 12:53 pm

I officially relapsed 35 months after ASCT with no maintenance following transplant.

Nancy in Phila

[jane84]

Re: Length of first remission with or without SCT

by jane84 on Thu Mar 19, 2015 1:24 pm

I officially relapsed 23 months after ASCT (17 months after consolidation therapy). I only reached VGPR and my kappa free light chains started rising 10 months after consolidation.

I hope the second remission will be much longer.

Good luck

[Mark K]

Re: Length of first remission with or without SCT

by Mark K on Thu Mar 19, 2015 3:38 pm

I had Velcade / dex induction, 3 months later had ASCT, with 4 months of Revlimid main­te­nance afterwards. So far, I'm at 33 months into my first remission (CR).

[Britt]

Re: Length of first remission with or without SCT

by Britt on Thu Mar 19, 2015 8:13 pm

Were any of you MRD negative before or after SCT?

[mikeb]

Re: Length of first remission with or without SCT

by mikeb on Fri Mar 20, 2015 10:34 am

Hi Britt,

In July 2014, tests showed I was MRD negative and in sCR. That came 14 months after my auto SCT. I had 2 cycles of RVD consolidation and 10 months of Revlimid maintenance following the SCT at that point.

I'm still continuing the Revlimid maintenance, planned until September of this year (which will be 2 years).

So far, monthly blood and urine tests continue to look good.

Mike

[coachhoke]

Re: Length of first remission with or without SCT

by coachhoke on Fri Mar 20, 2015 2:41 pm

I still don't know the meaning you each use for relapse (or disease progression). I do under­stand new CRAB features, or doubling the m-spike, or rise in free light chains. I guess I'm not sure what I should be looking for, having never had any symptoms in the original diagnosis.

Coach Hoke

[NStewart]

Re: Length of first remission with or without SCT

by NStewart on Fri Mar 20, 2015 6:47 pm

I reached CR with 0.0 g/dl m-spike with no paraparesis noted 7 months post transplant. 15 months after transplant I started to have an m-spike reading of 0.5 g/dl (5 g/l), but still with no paraparesis noted. At 35 months post transplant, my m-spike jumped to 3.8 g/dl with paresis noted, an official relapse. MRD wasn't available in 2010, so I wasn't tested. I have been stable at 0.6 g/dl m-spike since March 2013 with no paraparesis noted. I'm on 10 mg of Revlimid for 21 days and 20 mg of dex one time per week.

My induction therapy was 15 mg of Revlimid for 21 days and 40 mg of dex one time per week. Prior to transplant, my M-spike was 0.5 g/dl. I started maintenance at 100 days post transplant with 10 mg of Revlimid, but I had a bad reaction to the drug and it was stopped. My oncologist said that, when I relapsed, that there would be plenty of things that could be tried to treat. At the time, I felt that it was too soon to add drugs back into my system. So, when I relapsed, I felt that it was ok to try Revlimid and dex again. I responded quickly to the regimen.

Nancy in Phila

[tpt]

Re: Length of first remission with or without SCT

by tpt on Fri Mar 20, 2015 7:54 pm

Hi Nancy,

Following your comment about relapse and maintenance, I have some confusions, so you could probably help.

My Dad has never had a CR. His lab readings have always shown a bit of excess kappa light chain. It was 23ish post transplant. 19 months after transplant, it has become 29. He has no maintenance. He does not secrete an M-spike. He has del(17p).

Doc has suggested a thalidomide maintenance (Revlimid is not easily available in my country). But Dad refused. It looks like, in your case, your doc was okay to wait for the treatment until relapse. Well, (1) in Dad's case, do you know if is he in relapse yet, and (2) if not, is it reasonable to wait for relapse to start the treatment, like you?

Thanks!