I have decided to discontinue my Revlimid and dexamethasone maintenance treatment. I have been on the treatment since about a year ago, at which time I had attained a good response to induction therapy with Revlimid, Velcade, and dexamethasone. (I was too old for transplant.)
The side effects now, though tolerable, are rather unpleasant; plus I worry about permanent damage from the drugs.
My IgG is now 426 mg/dL (normal = 767-1590), free kappa light chain is 1.99 mg/dL (normal = 0.33-1.94), and the M-spike is no longer detectable. These figures have been relatively stable for about a year.
I understand that there are some data to suggest a two-year maintenance can increase progression-free survival by about a year. However, I'm not sure these studies apply to me, particularly since I have not had a transplant.
Thanks, and good luck to all!
Bodumene
Forums
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Stopping Revlimid & dex maintenance: what's next?
I stopped treatment in 2016 after having a hard stem cell transplant in 2014, although I was advised against it. It was a tough decision for me and I bet it has been for you, but I don’t regret stopping it, and have had 2+ years of good quality of life. During the time after the stem cell transplant and on Revlimid I had the following:
Take care and I hope that you have a happy journey going forth.
- Severe neutropenia
- Gallbladder surgery
- Macular hole surgery
- Shingles
- Influenza
- MRSA
- Multiple UTIs
- Small intestinal bacterial overload
- Last but not least fatigue
Take care and I hope that you have a happy journey going forth.
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Pmckeon - Name: PEM
- When were you/they diagnosed?: 2013
- Age at diagnosis: 59
Re: Stopping Revlimid & dex maintenance: what's next?
Hello Bodumene,
I have been on and off a high-dose Revlimid-dexamethasone regimen for over 10 years if you can believe it, and I mixed in a regimen of Velcade here and there.
My typical routine has been to do about 6-8 months of high-dose Revlimid-dex therapy (basically as long as I can stand it), then I go on drug sabbatical for 12-18 months at a time, until my IgG and M-spike get too high, then back on Revlimid-dex. This has been working for 10 years. My mantra has been to "do what works." I was lucky or unlucky, depending on how you look at it, being diagnosed at a younger age of 42.
I have not had a stem cell transplant, though my doctor keeps pushing me for it. My current IgG is at 1,367 and M-spike at 2.5 g/dl. I've been off medicine for about 8 months, and of course my myeloma keeps crawling back.
My last regimen, I have done Ninlaro mixed in. Response has been typical. Hope this helps.
The more info, the better, I always say.
Good luck everyone, John
I have been on and off a high-dose Revlimid-dexamethasone regimen for over 10 years if you can believe it, and I mixed in a regimen of Velcade here and there.
My typical routine has been to do about 6-8 months of high-dose Revlimid-dex therapy (basically as long as I can stand it), then I go on drug sabbatical for 12-18 months at a time, until my IgG and M-spike get too high, then back on Revlimid-dex. This has been working for 10 years. My mantra has been to "do what works." I was lucky or unlucky, depending on how you look at it, being diagnosed at a younger age of 42.
I have not had a stem cell transplant, though my doctor keeps pushing me for it. My current IgG is at 1,367 and M-spike at 2.5 g/dl. I've been off medicine for about 8 months, and of course my myeloma keeps crawling back.
My last regimen, I have done Ninlaro mixed in. Response has been typical. Hope this helps.
The more info, the better, I always say.
Good luck everyone, John
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