Grateful if anyone can give me some advice on Revlimid. I'm half way thru my second cycle but am still having blood and platelet transfusions weekly. I'm concerned that it is not working. How long does it take to kick in?
Fatigue is a major issue.
Many thanks for any advice.
Forums
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: How long does it take Revlimid to work?
Hello, Ailsa:
Can you please explain your induction regimen, and what was your starting condition (did you have an M-spike)? Forum participants can give a better answer with that additional info.
Regards,
Can you please explain your induction regimen, and what was your starting condition (did you have an M-spike)? Forum participants can give a better answer with that additional info.
Regards,
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JPC - Name: JPC
Re: How long does it take Revlimid to work?
Thalidomide initially worked and I was going for a stem cell transplant but myeloma came back quickly, so transplant cancelled. Started on Revlimid with 40 mg of dexamethasone once per week. Bone marrow biopsy came back at 65% after first three weeks on Revlimid, an increase from 50% when stem cell transplant cancelled.
Hope this helps.
Hope this helps.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: How long does it take Revlimid to work?
Hello Ailsa:
What I have heard from several doctors is that the myeloma in the bone marrow is "patchy". You can get a different bone marrow plasma cell percentage from the same patient taking the reading at two different spots. That being said, it certainly does not look like your numbers are going down. You may need to discuss with your doctor a change in order to get the numbers down a bit more.
Good luck to you. Regards, JPC
What I have heard from several doctors is that the myeloma in the bone marrow is "patchy". You can get a different bone marrow plasma cell percentage from the same patient taking the reading at two different spots. That being said, it certainly does not look like your numbers are going down. You may need to discuss with your doctor a change in order to get the numbers down a bit more.
Good luck to you. Regards, JPC
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JPC - Name: JPC
Re: How long does it take Revlimid to work?
I'm wondering the same thing as Ailsa.
My myeloma has just relapsed after 26 months of remission after my stem cell transplant. I was not on any form of maintenance therapy after my transplant. I began Revlimid (10 mg) and dexamethasone on September 21, 2018 and have completed just one cycle thus far. Between September 26 and October 19 my M-spike increased from 6 g/L (0.6 g/dL) to 8 g/L (0.8 g/dL) . While my M-spike is still low, it seems to be rising.
So I am wondering how long it typically takes before one starts to see the M-spike stabilize and then begin to drop when taking Revlimid and dexamethasone.
I seem to recall reading that it can take a few cycles for the drug to kick-in.
Thank you.
My myeloma has just relapsed after 26 months of remission after my stem cell transplant. I was not on any form of maintenance therapy after my transplant. I began Revlimid (10 mg) and dexamethasone on September 21, 2018 and have completed just one cycle thus far. Between September 26 and October 19 my M-spike increased from 6 g/L (0.6 g/dL) to 8 g/L (0.8 g/dL) . While my M-spike is still low, it seems to be rising.
So I am wondering how long it typically takes before one starts to see the M-spike stabilize and then begin to drop when taking Revlimid and dexamethasone.
I seem to recall reading that it can take a few cycles for the drug to kick-in.
Thank you.
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: How long does it take Revlimid to work?
Hi Karen,
Sorry to hear about your relapse. Fortunately, you still have lots and lots and lots of treatment options.
I wouldn't draw too many conclusions from the slight increase in your M-spike. A change from 0.6 to 0.8 g/dL is practically within the margin of error for M-spike readings.
I also would keep in mind that relapsed disease responds differently to treatment than newly diagnosed disease. Put simply, relapsed disease is harder to treat, so it doesn't respond as easily to treatment, and when it does respond, I believe it's also a slower response.
As you also suggested, responses to Revlimid can be really drawn out. I recall someone here in the forum saying that it took them a year or two while on Revlimid maintenance to reach their deepest response.
For now, I'd say your myeloma is basically being kept at bay. If your M-spike keeps going up, perhaps your doctors will consider re-trying Velcade together with the Revlimid. If they want to be creative, they also could include nelfinavir to resensitize your myeloma to the Velcade. (There was a Beacon news article recently about a trial that showed that nelfinavir, Velcade, and dex can be used in patients who previously were treated with Velcade and became resistant to it.)
Good luck, and please keep us posted on what happens with the Revlimid-dex treatment.
Sorry to hear about your relapse. Fortunately, you still have lots and lots and lots of treatment options.
I wouldn't draw too many conclusions from the slight increase in your M-spike. A change from 0.6 to 0.8 g/dL is practically within the margin of error for M-spike readings.
I also would keep in mind that relapsed disease responds differently to treatment than newly diagnosed disease. Put simply, relapsed disease is harder to treat, so it doesn't respond as easily to treatment, and when it does respond, I believe it's also a slower response.
As you also suggested, responses to Revlimid can be really drawn out. I recall someone here in the forum saying that it took them a year or two while on Revlimid maintenance to reach their deepest response.
For now, I'd say your myeloma is basically being kept at bay. If your M-spike keeps going up, perhaps your doctors will consider re-trying Velcade together with the Revlimid. If they want to be creative, they also could include nelfinavir to resensitize your myeloma to the Velcade. (There was a Beacon news article recently about a trial that showed that nelfinavir, Velcade, and dex can be used in patients who previously were treated with Velcade and became resistant to it.)
Good luck, and please keep us posted on what happens with the Revlimid-dex treatment.
Re: How long does it take Revlimid to work?
Hello Karena,
I also had Revlimid plus dexamethasone after a relapse in 2014. My M-protein was over 11 g/l (1.1 g/dL) at that time. From September 2014 when I went back on treatment, the amount fell slowly, but it took longer than I thought it would. By September 2015 it had gone down to 1.3 g/l (0.13 g/dL) and continued a downward trend until I went off the medications in September 2016. I was on a stronger dose of Revlimid, 25 mg.
Hope that information helps, but myeloma is such a variable disease that what one person experiences might not be the same as for someone else.
I also had Revlimid plus dexamethasone after a relapse in 2014. My M-protein was over 11 g/l (1.1 g/dL) at that time. From September 2014 when I went back on treatment, the amount fell slowly, but it took longer than I thought it would. By September 2015 it had gone down to 1.3 g/l (0.13 g/dL) and continued a downward trend until I went off the medications in September 2016. I was on a stronger dose of Revlimid, 25 mg.
Hope that information helps, but myeloma is such a variable disease that what one person experiences might not be the same as for someone else.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long does it take Revlimid to work?
Hello Terry and Nancy!
Thank you so much for your responses. While I know that I have a lot of treatment options still at my disposal, I was a wee bit disappointed that my first cycle of Revlimid hadn't had any impact on my myeloma. I remember that my induction therapy (CyBorD) had an immediate positive effect on my numbers, so I will have to learn to be patient, and understand that relapsed disease is sometimes more challenging to treat and slower to respond.
My next appointment with my specialist is on November 5, and if my blood draw on that date doesn't show stabilization of my M-spike or at least a bit of improvement, I have a feeling that he may want to increase my dosage, which I am dreading. I think I have been spoiled by 2 years of no treatments and no side effects! I will have to keep reminding myself that this is a marathon, not a sprint.
Thanks again,
Karen
Thank you so much for your responses. While I know that I have a lot of treatment options still at my disposal, I was a wee bit disappointed that my first cycle of Revlimid hadn't had any impact on my myeloma. I remember that my induction therapy (CyBorD) had an immediate positive effect on my numbers, so I will have to learn to be patient, and understand that relapsed disease is sometimes more challenging to treat and slower to respond.
My next appointment with my specialist is on November 5, and if my blood draw on that date doesn't show stabilization of my M-spike or at least a bit of improvement, I have a feeling that he may want to increase my dosage, which I am dreading. I think I have been spoiled by 2 years of no treatments and no side effects! I will have to keep reminding myself that this is a marathon, not a sprint.
Thanks again,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: How long does it take Revlimid to work?
Hi Karen,
Good point about the possibility of raising your Revlimid dose. I could see how that would be an option your doctor would want to explore first. Hopefully that won't be necessary.
Good point about the possibility of raising your Revlimid dose. I could see how that would be an option your doctor would want to explore first. Hopefully that won't be necessary.
Re: How long does it take Revlimid to work?
I've been on and off Revlimid for six years (no dexamethasone or Velcade since induction, no transplant). I've taken many drug holidays, including the entire year of 2015. A Revlimid dose of 2.5 mg. seems to keep my M-spike around 0.2 g/dl. Following my drug holidays, my M-spike trends toward 1.0 g/dl and then I restart with Revlimid. It usually takes about 3 cycles (3 months) until a definite downward trend occurs. If it takes longer, I raise the dose to 5 mg.
I have IgG kappa multiple myeloma and it has been described as indolent. I consider myself very lucky
I have IgG kappa multiple myeloma and it has been described as indolent. I consider myself very lucky
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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