[fetalsono]

How long have people been on Revlimid?

by fetalsono on Sat Jul 12, 2014 2:17 pm

I was diagnosed with smoldering myeloma a year ago and started on Velcade / Cytoxan / dex 6 months ago when my light chains rose to 1100 (kappa) and my creatinine started to rise. After 5 rounds of therapy my light chains have come down to 400 but my creatinine is still elevated (1.9-2.1). My Myeloma doc wants me to switch to Revlimid / dex in the hopes of bringing my kappa light chains lower and lowering, or at least preventing, my creatinine from going higher. He said I am likely to be on this for a couple of years if not longer.

So now for my question. I am a bit nervous from all that I have read about starting Revlimid, which I will in three days. How long have people been on it (years), and at what dose?

He is starting me on 25mg and dex 20mg. He said that, depending on my symptoms, he may lower it after a couple of rounds. I am not headed for a transplant so the ultimate goal will be to keep my myeloma controlled chronically.

Thanks for any advice.

[Castaway]

Re: How long have people been on Revlimid?

by Castaway on Sat Jul 12, 2014 3:56 pm

Fetalsono,

I can only give you my experience with Revlimid and dexamethasone. i currently take 25mg Revlimid for 21 days with 7 off, and dexamethasone once per week at 40mg plus once per day 325 mg aspirin for blood clotting. Everyone seems to be a little different as to possible side effects for both of these drugs. My only issue was a rash on my neck from the Revlimid during my first round. That was cleared up with Aveeno healing ointment and 180mg Allegra (fexofenadine) allergy tablets. It took about 5 days to totally clear up. no problems since then. I have been on this treatment for almost 5 months. it has really dropped my numbers.

I just had my first visit with USC Keck Hospital. My current oncologist works with them and they have several doctors that specialize in multiple myeloma. I asked the doctor there your exact same question. Since I am having a really good response with these meds, she has suggested that I do a bone marrow harvest and storage as soon as I can, but if I continue to have good results from these drugs, I could go out to two years or more with them. After the bone marrow harvest they might drop the dosage to a lower mg on the Revlimid.

I am trying to continue working for two more years until I can be close to retirement then have the transplant. Who knows, by then there might be some other treatments. I just stay positive. every day is a gift so why waste it being negative.

Hope this helps a little,
George

[kullybunnny1]

Re: How long have people been on Revlimid?

by kullybunnny1 on Sat Jul 12, 2014 5:24 pm

I was on a 25mg Revlimid dosage 14 on, 7 off for 4 cycles along with Velcade / dex until remission. I then completed an ASCT and achieved a Very Good Partial Response. I was then told by my multiple myeloma specialist that I'll be on a 10mg Revlimid dosage until either a relapse or not being able to tolerate it.

So, in my case, I'll be on Revlimid for a long time. I'm concerned about secondary cancer but, at 49 years old, I'll trust my doctor on this call. Hope this helped.

Kully