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

What was your experience with consolidation post ASCT?

by KLR on Wed Jul 29, 2015 8:32 am

My husband had his autologous stem cell transplant (ASCT) in early May and has been feeling great. His transplant specialist is starting him back on RVD (Revlimid, Velcade, dexa­metha­sone) at about 97 days post transplant. It will be the exact dosages he received in induction, with slightly less Velcade, due to neuropathy.

The plan is for him to do 4 cycles as consolidation, at these levels, before going to mainte­nance.

Is this based on the French study and TT at UAMS? Is everyone doing this now? How did your body react going back on chemo soon after an ASCT?

My husband did well on RVD during induction, not too many side effects and reaching a com­plete response, but after the ASCT, I wonder about the side effects after all his body has just gone through.

KLR
Name: KLR
Who do you know with myeloma?: Husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 58

Re: What was your experience with consolidation post ASCT?

by SandyR on Wed Jul 29, 2015 10:22 am

I had the same treatment after my SCT, but had not bounced back after my SCT mostly due to graft-versus-host disease (GVHD), so I may not be a good comparison.

After the second round, I experienced shortness of breath that they said was from the Velcade so they lowered the dose for the next round. I still had problems but not as bad. Then they dropped the Velcade. By the fourth dose, my platelets dropped and they stopped all treatment.

SandyR
Name: Sandy R
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 8/1/2012
Age at diagnosis: 59

Re: What was your experience with consolidation post ASCT?

by Cheryl G on Wed Jul 29, 2015 10:30 am

Hi KLR,

Is your husband's myeloma considered to be high-risk, based, for example, on the chromosomal abnormalities he has?

The reason that I ask is because, for high-risk patients, I think the Emory study discussed in this article,

"Extended Post-Transplant Treatment With Revlimid, Velcade, And Dexamethasone Yields High Survival Rates In High-Risk Myeloma," The Myeloma Beacon, Nov 26, 2013

has had a strong influence in encouraging post-transplant RVD in high-risk patients.

Cheryl G

Re: What was your experience with consolidation post ASCT?

by KLR on Wed Jul 29, 2015 12:49 pm

SandyR - Thanks. What have you been on since then?

Cheryl G - He is higher risk with the t(4:14) abnormality, IgA, and diagnosed stage 2. Thanks, I had forgotten about that article.

KLR
Name: KLR
Who do you know with myeloma?: Husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 58

Re: What was your experience with consolidation post ASCT?

by torquay1943 on Fri Jul 31, 2015 5:05 am

I had my 2nd transplant in March and am now nearly at the end of the second cycle of dex, Revlimid, and Velcade. I too am higher risk, i.e. t(4;14), IgA.

My reaction has been pretty similar to that of the 4 cycles I had before the transplant. Velcade Friday; great on Saturday; Sunday and Monday are pretty well rubbish; then I gradually pop up to feeling good most Wednesdays and Thursdays.

Anna 77

torquay1943

Re: What was your experience with consolidation post ASCT?

by mikeb on Fri Jul 31, 2015 2:46 pm

Hi KLR,
Good question!

First of all, I'm glad to hear that your husband did well with the induction therapy and SCT.

Back in 2013 I had 3 cycles of RVD induction, then an SCT, then 2 cycles of RVD consolidation starting 90 days after the SCT. That has been followed by 2 years of Revlimid maintenance. I'm at the 22 month mark of that 2 years. This protocol is dictated by the clinical trial that I'm participating in (NCT01208662).

After getting through the SCT, I thought the 2 cycles of RVD consolidation would be a walk in the park. The consolidation wasn't horrible, but I definitely underestimated how it would affect me. I had more fatigue than I'd expected, probably about like during the rougher parts of the induction cycle.

I also have peripheral neuropathy. It began during the first cycle of induction therapy, got a lot worse during the SCT, and then slightly worse again during consolidation. Lyrica has helped a lot, so your husband might ask his doctor about that.

The biggest issue for me during consolidation, though, was chemo brain, especially since I was back working at my mentally-taxing job during consolidation. The chemo brain during consolidation was definitely worse than during induction for me. Fortunately, it's gotten a lot better during the maintenance phase.

The bottom line on all of this is that I've responded well to these treatments and achieved sCR and MRD-negative last August. I'll be getting a BMB in a month to see where we stand now. (I should probably also mention that I'm standard-risk.)

Best wishes to your husband and to you. Please keep us posted on how things are going.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: What was your experience with consolidation post ASCT?

by CabinGirl on Tue Aug 04, 2015 10:47 am

I had four rounds of RVD before I did my auto SCT in February 2015 at Mayo. At my Day 100 follow-up visit, my myeloma specialist decided to start Velcade as my maintenance plan. I have the 17p(del) high-risk abnormality. I get Velcade (subQ) every other week and Zometa once a month. After my ASCT, I reached stringent complete response (sCR).

Currently feeling OK, although I do have some GI issues that I attribute to the penicillin and acyclovir that I take 2 times per day. Fatigue is also an issue, but I try and stay positive and keep putting one foot in front of the other. Slowly regrowing some hair, which was totally gone from melphalan given at transplant.

I'm hoping I can keep my sCR status for a long time. I have stem cells frozen at Mayo for another 2 transplants, if need be.

CabinGirl
Who do you know with myeloma?: Self
When were you/they diagnosed?: Sept. 2014
Age at diagnosis: 57

Re: What was your experience with consolidation post ASCT?

by EF11 on Sun Aug 09, 2015 10:23 pm

My husband is on the same protocol as your husband and also did quite well through it all, and he's just finishing cycle 2 of consolidation. He's handling it much better than the cycles pre-transplant so far.

He says that the ability to exercise has helped a lot. Pre-transplant he was on crutches for a huge tumor in his hip. His biggest complaint pre-transplant was bloating / constipation, so the exercise helps with that. He does have neuropathy and high dose gabapentin plus supplements have been helpful.

My husband felt back to himself when he started consolidation - going in feeling strong and fit. I imagine that helps with his ability to handle the drugs.

He did not have genetic abnormalities to make him high risk, but did present at stage 3 with aggressive disease.

Good luck to your husband.

EF11
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 43


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