Comments on: Revlimid Maintenance Therapy Is Effective For Multiple Myeloma After Stem Cell Transplant (ASCO 2010)

By: Beth Winters

Beth Winters — Thu, 05 Jan 2012 21:29:12 +0000

Anyone out there on Revlamid who did not get any remission from ASCT ?? I am an RN-read the studies and neither addressed that issue.

By: nancy s

nancy s — Mon, 12 Dec 2011 15:51:33 +0000

Hi Winnifred, I did have stomach upsets after a few months on a low dose of Revlimid for ‘maintenance chemo’. I would get intense vomiting, that could be controlled by anti-nausea meds, sort of a ’24 hour flu’. Was unsure as to whether it was seasonal flu or drug side effects. This happened several times…haven’t had it since went off Revlimid a few months ago though. That makes me think it was a side effect. Of course, my immunities were so low, that it could also have been repeated bouts of ‘flu’…hard to say!!

By: Winifred engerman

Winifred engerman — Mon, 12 Dec 2011 15:27:22 +0000

I have been on revlimid for a year after an autologous stem cell transplant. The side effects are manageable.
I get very tired at night, joint pain, and some dizziness, yet I live a full rewarding life. Question: Does anyone
Out there have stomach issues from revlimid? I have Crohns , so it is hard to know if the worsening of my stomach
Symptoms is due to Crohns or revlimid.
Wini Engerman

By: Barbara Burgess

Barbara Burgess — Tue, 09 Aug 2011 16:57:16 +0000

I am 1 month post SCT. It went very well, without complications. I am on a clinical trial and I got the arm that has tandem transplants with Revlimid maintenance for 3 years starting 3 months after my second transplant. My engraftment happened very quickly and my blood counts are normal! I am having a bone marrow biopsy next month to see what is happening with the MM. It should be interesting to see where I stand. Meanwhile, I will receive my second transplant in October.

By: John Pampillonia

John Pampillonia — Wed, 27 Jul 2011 22:12:13 +0000

It’s been 15 months since my ASCT. My Doctor put me on 10 mg of Revlimid as maintenance about 3 months after, and changed to 5 mg about 4 months ago. Been in partial remission the entire time until last month when I was told by my Doctor I was in full remission. I was given all my required vaccinations after 1 year post ASCT which I was told was standard. In November I will be getting another full body bone scan and an MRI along with the usual blood work and 24 hr Urine test. Although my Doctor feels I am doing very well she acted like it was just a matter of time before the MM would reappear. She said it could be a year or maybe even a few years, but she seemed pretty sure it was coming back. I’m not convinced that it has to come back, even though it does in most cases, but her feeling on the matter put a damper on what otherwise was a day of good news.

By: Nancy S.

Nancy S. — Tue, 19 Jul 2011 14:47:07 +0000

Hi Everyone! I was on revlimid maintenance chemo for a year. It began 100 days after my SCT, which was in January 2010. The year was a little difficult at times, and had to take longer breaks between some of the cycles due to low neutrophil and WBC counts (i.e. low immunity). And I was getting a little emotional towards the end of it! The dose started at 10 mg, but after a few months, my oncologist lowered it to 5 mg, since it was really just maintenance, and I did have side effects besides the low immunity..including some pain in my feet. Three months after going off the chemo, I had a blood check up which showed everything to still be fine…in a CR right now. So, am still taking bisphonate treatment for my damaged bones, but now just check in every three months to make sure everything is going OK. The whole MM experience has been very nerve wracking, but seem to be doing well!

By: Christina

Christina — Tue, 19 Jul 2011 14:25:53 +0000

Hi Melissa,
Iwas in CR for 4years after my asct. No maintenance, but aredia. It was great. I relapsed last summer, did 9cycles of rev/dex. After 5cycles my numbers were normal, but we did 4 more. I have now been off rev/dex 2 months. All still good, I get a blood test next month to check again.
It’s difficult to relapse, emotionally, but you get thru. My doctor did start me on the 25 of dex, as it was his opinion to go bigger first. But lots of oncologist do start with the lower dose to see how you respond.
Also, my first 2 cycles with rev did not effect my m protein much, so when he added the dex,it went down very quickly.

Dex is hard to take, but I learned what to do on certain days.
Good luck, and best wishes.

Christina

By: Melisa

Melisa — Tue, 19 Jul 2011 00:17:16 +0000

I am 39 years old and had an ASTC 2 years 4 mos ago. I chose not to do maintenance and was in remission until last week when my Dr gave me the news that I have traces that have returned. I ha e decided to start maintenance therapy (10mg) daily. I will let you know how it goes.

By: Patti Smogor

Patti Smogor — Thu, 23 Jun 2011 20:24:49 +0000

My husband had an ASCT last July which put him into full remission. The docs told him no maintenance therapy needed at this time.

By: Mitch Miller

Mitch Miller — Tue, 15 Mar 2011 19:49:22 +0000

What did your hematologist say, Mike Baron? I’m between Auto SCT and beginning maintenance Revlimid 10 mg.