[jennifrp]

Re: Did you do maintenance therapy after your SCT?

by jennifrp on Thu Dec 04, 2014 6:31 pm

Hi Leslie,

I've had two auto transplants. The first was in 2006 and I didn't do maintenance. The cancer came back in 2009 and I had another transplant in 2011. I was on 10 mg of Revlimid after that for about 10 months before I told my doc that I was done with it. I'm still technically in remission, though my m-spike is slowly rising (currently only at 0.19 g/dL) right now. I always say to go with your gut. If you need a break, take a break.

Jen

[Annamaria]

Re: Did you do maintenance therapy after your SCT?

by Annamaria on Fri Dec 05, 2014 4:36 am

I had my SCT in December 2012. It did not change the type of response, which was a VGPR. My oncologist was in favor of maintenance and said to me that it was even possible that in just a few months I could reach a complete response. I read a lot on the subject, and consulted two other specialists, one in favor and the other one against. The latter said that, at the time of relapse, I would not be able to use Revlimid if I had used it for maintenance. At the time I was truly exhausted and my stomach was, and still is, messed up. I feared that, with Revlimid, I was going to be too weak to go to my beloved swimming pool, which helps me psychologically as well as physically.

But, most of all, I realized that the research into overall survival and progression free disease with lenalidomide [Revlimid] is in an early stage and the results are not definite. While they seem to prove that the remission is longer, almost the double, in terms of overall survival, only one study out of three suggests that Revlimid lengthens the life span.

So far so good for me, but, as Jerry Barnes said, you never know if you have taken the right decision, because it is truly a tough one.

[sunshne954]

Re: Did you do maintenance therapy after your SCT?

by sunshne954 on Mon Dec 15, 2014 5:37 pm

I am 4.5 years post transplant and I thank God every day for my complete response. I did NOT go on maintenance. It was discussed and both my oncologist and I decided that I would not receive any maintenance medications. Why have to deal with the bad feelings from chemotherapy when you are in CR after a transplant? The only medication I get is my Zometa infusion every 3-4 months.

I think the decision needs to be an educated one, based on how you responded to the initial chemotherapy and the results of the transplant.

Patty

[Mister Dana]

Re: Did you do maintenance therapy after your SCT?

by Mister Dana on Wed Dec 17, 2014 1:18 am

In this thread, a bit above here, is a comment dated December 3rd by DallasGG that cites a recently published abstract that very much favors continuous maintenance chemo. From the abstract I can't tell if the patients in that Italian study had transplants. Does anyone know whether they did?

[GaryJ]

Re: Did you do maintenance therapy after your SCT?

by GaryJ on Sun Jul 05, 2015 12:34 pm

I am 4 months out from my SCT. My doctor wants me to go on Revlimid maintenance 10 mg 21 out of 28 days. I am 68 and in good health. Diagnosis was stage one last September. My transplant team and doctor both said I am healthy enough for a 2nd SCT should I need one.

My question is (which I will be asking my doctor): Why would I go on maintenance therapy and then get a second transplant? How much chemo do they want to give me?

I can see going on maintenance after my 2nd SCT, but why between my first and second? There are drawbacks to maintenance therapy, secondary cancer increased risk and the side effects.

Has anyone had a similar situation?

[CabinGirl]

Re: Did you do maintenance therapy after your SCT?

by CabinGirl on Wed Jul 08, 2015 5:31 pm

I had my auto SCT in February 2015. I have the high-risk del(17p) abnormality (found using FISH testing). Both my myeloma specialist at Mayo and my local oncologist highly encouraged me to go on maintenance chemo, so I began Velcade (subQ) injections right after I completed my Day 100 checkup. Blood and bone marrow results from my Day 100 visit are showing I have reached stringent complete response (sCR). WooHoo!!

Let's hope the Velcade can keep me in that response category for a long, long time. I have 2 more sets of stem cells frozen at Mayo if I need to do another SCT in the future.

[Pmckeon]

Re: Did you do maintenance therapy after your SCT?

by Pmckeon on Wed Jul 08, 2015 9:06 pm

I had a transplant May of 2014 and was surprised that it was suggested that I go on Revlimid 10 mg after it, since I thought that I was finished at least for a while. The transplant was considered a VGPR and I have del(13). The Revlimid and Zometa are not good for me, as I sleep a lot and have muscle aches, diarrhea, and various other ailments. Recently I had a rash and severe diarrhea and also have had neutropenia.

I was told to go on Claritin (loratadine) and also have been on colestipol (Colestid) since stomach issues and had gallbladder removed in January 2015. I have no lytic lesions.

I feel as if I'm a renegade suggesting that I stop the Revlimid and Zometa. Has your experience been that your oncologist respected your decision to stop medication until your M-spike rises, since that is what I wish? I feel that I will not be supported by MDs in this decision.

[Anonymous]

Re: Did you do maintenance therapy after your SCT?

by Anonymous on Sun Aug 16, 2015 8:11 am

I was put on Revlimid 3 months after my SCT. It made me feel horrible - no appetite (a good thing for me), always tired, and really no interest or energy to do very much.

After consulting with my multiple myeloma specialist, I decided to stop taking it. That was 2 1/2 years ago. Since then, all of my blood work has improved and now I am in remission.

I know Revlimid is supposed to increase the remission period, but I choose to have quality in my life. This is me, and I know others would not feel this way. By the time I am out of remission, there will be new drugs to try.

Mary

[JoAnn B]

Re: Did you do maintenance therapy after your SCT?

by JoAnn B on Sun Aug 16, 2015 12:01 pm

I had an SCT in December 2011. I did not do maintenance therapy. My kappa light chains are now starting to rise. Still not doing any chemo, but I know it will be soon. I feel lucky to have had 3 1/2 years drug free.