[LeslieM]

Did you do maintenance therapy after your SCT?

by LeslieM on Tue Dec 02, 2014 3:11 pm

To those who have had the stem cell transplant (SCT), are any of you currently taking Revlimid or any other chemo drug for maintenance?

I just recently had a SCT (October 2014). In January, I will have a bone marrow biopsy to see if the SCT made me cancer free. My doctor wants me to then go on low dose Revlimid as a main­te­nance drug. It is supposed to keep you in remission longer. I really don't want to go on it.

Did you take any maintenance drugs?

[Julie Phillips]

Re: Did you do maintenance therapy after your SCT?

by Julie Phillips on Tue Dec 02, 2014 5:02 pm

I had my SCT July of 2013 and post 100 days my doctor did blood work and my M spike was zero. He said that if my protein number is zero there is no need for a bone marrow biopsy (Yay). I am not on any maintenance medicine. My doctor did not recommend it, but I had decided even if he did I was not going to take it. I did not want to feel sick anymore and I did not want the highs and lows of dex.

Good luck to you.

[DallasGG]

Re: Did you do maintenance therapy after your SCT?

by DallasGG on Wed Dec 03, 2014 12:47 am

I had my auto SCT in February of 2014. 126 days after my transplant, I started low dose Revlimid (10 mg / day, 28 out of 28 days) and dexamethasone (8 mg / week). I did that for about 5 1/2 months and just switched this week to taking the same dose of Revlimid from 28 out of 28 days to 21 out of 28 days.

After my transplant, my transplant doctor wanted me to not do maintenance, while my oncologist wanted me to be on maintenance. I made the decision to do maintenance after reading articles citing studies showing better long term survival with maintenance therapy vs. no maintenance therapy.

Here's one of those articles:

http://www.cancernetwork.com/asco-2014-hematology/continuous-therapy-best-newly-diagnosed-multiple-myeloma

[Blackbird]

Re: Did you do maintenance therapy after your SCT?

by Blackbird on Wed Dec 03, 2014 11:31 am

I am a little over 1 year post transplant. I started on 10 mg Revlimid at 100 days post transplant with no dex. I take it daily with no breaks. Thus far, other than some minor fatigue, I have had no bad side effects.

[Wayne K]

Re: Did you do maintenance therapy after your SCT?

by Wayne K on Wed Dec 03, 2014 12:36 pm

I didn't and my remission lasted 3 1/2 years.

[NStewart]

Re: Did you do maintenance therapy after your SCT?

by NStewart on Wed Dec 03, 2014 3:02 pm

I had my transplant in Jan 2010. At 100 days, I started with 10 mg of Revlimid, but that only lasted for 5 days because of a bad reaction to the drug. I felt that it was too soon to restart any drugs. My oncologist said that it was ok not to do maintenance because there would be plenty of things that we could use when I relapsed.

I was drug free for almost 3 years when I relapsed. I restarted treatment with Revlimid at 15 mg for 18 months and then dropped the dose to 10 mg for 21 days / 7 days with 20 mg of dex once a week. Revlimid and dex brought my numbers down quickly, and I have remained stable at 0.6 g/dl M-spike for about 20 months.

Nancy in Phila

[mikeb]

Re: Did you do maintenance therapy after your SCT?

by mikeb on Wed Dec 03, 2014 3:57 pm

Hi LeslieM,

First of all, I hope that your SCT went well and that you get good test results in January.

But there's one very important thing to be aware of. No matter how good your test results are in January, you will not be "cancer free." Current treatments are unable to eliminate all myeloma cells. So, as my myeloma specialist told me, the working assumption is that you have myeloma cells even if they are not detected. That's why maintenance therapy is becoming more widely used - to get the myeloma burden as low as possible.

I've been on 10 mg or 15 mg of Revlimid everyday since September 2013. Assuming all goes well, the plan is to continue that until September 2015. I'm definitely looking forward to that date, but am happy that Revlimid has helped drive my myeloma numbers down. I'm sure that main­te­nance was the right choice for me.

Good luck!

[jantkme2]

Re: Did you do maintenance therapy after your SCT?

by jantkme2 on Thu Dec 04, 2014 10:49 am

I am 2 1/2 years post SCT. At 1 year I started 10 mg Revlimid maintenance every other day (because I broke out in a rash on the 3 weeks on 1 week off routine). My M-spike is hovering at 0.26 g/dL. I have minimal fatigue mostly on the days I take my medicine.

[Ben]

Re: Did you do maintenance therapy after your SCT?

by Ben on Thu Dec 04, 2014 1:19 pm

I had my Auto SCT May 28, 2013. Started maintenance with Velcade subq 1x / week x2 -- 28 day regimen.18 months in remission and no M-protein in blood. Doing great except for some stable right lower extremity neuropathy.

[JBarnes]

Re: Did you do maintenance therapy after your SCT?

by JBarnes on Thu Dec 04, 2014 1:49 pm

Started on Revlimid at 10 mg daily after transplant. The light chains hung around in the teens so we moved to 15 mg daily. That drove the numbers down to single digits. Been doing this for 1.5 years. And, yes, I have side effects of fatigue, gastro and bad taste in my mouth. I've got six more months of maintenance and then we'll see if I can stand on my own without the crutch of drugs in my system.

I spoke to two different specialist and they all recommended maintenance, as the studies are clear that remission will last longer if you do maintenance. But the question is, would you like three years of drug free remission versus what you might get with maintenance. You never know if you chose the right path.

You just got to have faith in the specialist who is calling the shots and hope the statistics roll in your favor. Jerry.