My father's myeloma has recently relapsed and the doctors are suggesting Revlimid for a variety of reasons. His experience with Velcade was not great at all and he is terrified to try Revlimid - so much so that he might be choosing to not get any kind of treatment. If you have been on Revlimid would love to hear what your experience was like.
Thanks so much!
Stephanie
Forums
6 posts
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Re: Experience with Revlimid
I have been on both Revlimid and Velcade, although am not taking any chemotherapy at this time. One positive for Revlimid would be that it is taken orally, and so you do not need to have injections of any kind. This frees up your time and you don't have to be at a treatment centre for it, or have a 'port'. It comes in varying doses, so if your father experienced low neutrophil counts or other problems, perhaps the dose could be lowered. It seems to be often taken along with dexamethasone, but that is not always the case. I took it as 'maintenance chemo', not as a first line of treatment. In my case the real workhorse for clearing up my myeloma was Velcade. Hope your father can try it if that is what his physician recommends. I had some problems with it but worked around most of them, and it is an effective drug. I think that the neuropathy associated with Revlimid is less than that with Thalomid, which is in the same family of meds.
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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: Experience with Revlimid
Here are links to a couple of recent forum discussions on the side effects of Revlimid.
https://myelomabeacon.org/forum/sideeffect-of-revlimid-t841.html
https://myelomabeacon.org/forum/side-effects-of-revlimid-as-maintenance-drug-t172.html
In general, the side effects vary by person. I have experienced very few side effects. However, one of the other patients where I receive treatment had to discontinue Revlimid due to the rashes it caused.
I would also caution your father against thinking Revlimid will produce similar side effects to Velcade. The two are entirely different classes of drugs, so you can't assume reactions to them will be the same. Also, based on what I've read, the side effects to Velcade tend to be worse than Revlimid, particularly the peripheral neuropathy.
https://myelomabeacon.org/forum/sideeffect-of-revlimid-t841.html
https://myelomabeacon.org/forum/side-effects-of-revlimid-as-maintenance-drug-t172.html
In general, the side effects vary by person. I have experienced very few side effects. However, one of the other patients where I receive treatment had to discontinue Revlimid due to the rashes it caused.
I would also caution your father against thinking Revlimid will produce similar side effects to Velcade. The two are entirely different classes of drugs, so you can't assume reactions to them will be the same. Also, based on what I've read, the side effects to Velcade tend to be worse than Revlimid, particularly the peripheral neuropathy.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Experience with Revlimid
Having been on a combination of Revlimid, dex and prednisolone now for 16 months, side effects are hard to read and difficult to put down to any one cause. tiredness and the need for a break seem the most regular issue but diarrhoea, sleeplessness, bone pain and incidents of joint swelling are frequent but hard to pin point the blame on any one component.
Going back to full time work is difficult due the inconsistency of each week and this element of the treatment messes with me more than the incidents of pain etc.
The Revlimid is a 21 day sequence and we have been looking at the addition of dex and prednisolone to see what happens.
Don't get too much feedback on why or the point to these additions or changes in treatment, just part of the trial Here in Brisbane Australia.
Going back to full time work is difficult due the inconsistency of each week and this element of the treatment messes with me more than the incidents of pain etc.
The Revlimid is a 21 day sequence and we have been looking at the addition of dex and prednisolone to see what happens.
Don't get too much feedback on why or the point to these additions or changes in treatment, just part of the trial Here in Brisbane Australia.
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Alex
Re: Experience with Revlimid
Hi,
I've been taking Revlimid since I was diagnosed in December of 2010. I've been participating in a Phase 3 clinical trial since diagnosis, so at first I was taking the Revlimid along with Velcade and dexamethasone. I would say of the three drugs, I had by far the greatest and most disruptive side effects from the dex.
I finished the first 8 cycles of the trial in July 2011 and went on a maintenance regimen of Revlimid (25 mg in a 21-day cycle) and dex. I was still having many side effects from the dex (weight gain, sleeplessness, etc) and my doctor decided that I would do fine to discontinue the dex completely and just continue with the Revlimid. I'm still in the trial, fortunately, since Revlimid is so expensive! But now that I'm just taking this one drug, I can better see if it is causing any side effects. I have to say that I have not noticed any aside from some very slight neuropathy in my toes and fingers. I am sometimes tired but not enough to affect my ability to work or get day-to-day stuff accomplished.
I'm sure everyone reacts differently, and it may be that if your father is older than I am (I'm 52) he may have a different reaction, but I'd think it would be worth trying it and then, if necessary, reducing the dose or discontinuing it if the side effects are really debilitating.
Good luck!
Karen
I've been taking Revlimid since I was diagnosed in December of 2010. I've been participating in a Phase 3 clinical trial since diagnosis, so at first I was taking the Revlimid along with Velcade and dexamethasone. I would say of the three drugs, I had by far the greatest and most disruptive side effects from the dex.
I finished the first 8 cycles of the trial in July 2011 and went on a maintenance regimen of Revlimid (25 mg in a 21-day cycle) and dex. I was still having many side effects from the dex (weight gain, sleeplessness, etc) and my doctor decided that I would do fine to discontinue the dex completely and just continue with the Revlimid. I'm still in the trial, fortunately, since Revlimid is so expensive! But now that I'm just taking this one drug, I can better see if it is causing any side effects. I have to say that I have not noticed any aside from some very slight neuropathy in my toes and fingers. I am sometimes tired but not enough to affect my ability to work or get day-to-day stuff accomplished.
I'm sure everyone reacts differently, and it may be that if your father is older than I am (I'm 52) he may have a different reaction, but I'd think it would be worth trying it and then, if necessary, reducing the dose or discontinuing it if the side effects are really debilitating.
Good luck!
Karen
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nykaren24
Re: Experience with Revlimid
My husband has been on Revlimid for myelodysplastic syndrome for the past two months and thus far has had no side effects. He is tired and weak all the time but we contribute that to his disease.
Before he started on Revlimid he was having blood transfusions about every 10-11 days, and he so far has gone 26 days without a transfusion, and hopefully it will continue.
When he was diagnosed his oncologist put him on azacitidine, which he showed no improvement, she then stopped that treatment and started him on the Revlimid.
This is sort of early to report, but just thought those of you who are getting those transfusions as often as he was would be happy to read this.
Before he started on Revlimid he was having blood transfusions about every 10-11 days, and he so far has gone 26 days without a transfusion, and hopefully it will continue.
When he was diagnosed his oncologist put him on azacitidine, which he showed no improvement, she then stopped that treatment and started him on the Revlimid.
This is sort of early to report, but just thought those of you who are getting those transfusions as often as he was would be happy to read this.
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maddey42
6 posts
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