Forums
Maintenance with Revlimid & Velcade but no steriods
I am wondering if anyone has been on maintenance treatment with a doublet of Revlimid and Velcade but no steroids. I thought that I read about a study of VR but I am not sure.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Maintenance with Revlimid & Velcade but no steriods
For maintenance, my mom started out as RVD, but 4 months into the treatment dropped the D, and continued her maintenance with RV.
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Treatment with Revlimid and Velcade but no steriods
I accidentally did Revlimid and Velcade alone without dex one day early in my induction phase - forgot to take the dex before getting my Velcade dose that morning. By late that afternoon, I was really hurting with nausea, a headache, flu-like symptoms, absolutely no energy. I felt worse right then than I ever felt during the stem cell transplant that came later. Eventually I realized that I'd forgotten the dex and took it. That helped return things to normal pretty quickly.
I'm not sure what the biological mechanism is for dex mitigating those side effects of the Velcade, but I made sure to take my dex before Velcade doses after that.
For maintenance, if Revlimid and Velcade were to be used in combination, I'm sure it would be smaller doses than what I got during the induction phase, so leaving off the dex might not be such a problem as it was for me.
That said, I've never heard of Revlimid and Velcade without dex until this thread.
I'm not sure what the biological mechanism is for dex mitigating those side effects of the Velcade, but I made sure to take my dex before Velcade doses after that.
For maintenance, if Revlimid and Velcade were to be used in combination, I'm sure it would be smaller doses than what I got during the induction phase, so leaving off the dex might not be such a problem as it was for me.
That said, I've never heard of Revlimid and Velcade without dex until this thread.
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance with Revlimid & Velcade but no steriods
Mike,
That is an interesting anecdote. I had never considered that dex might help mitigate side effects. I had always viewed it from the angle that it might be necessary to enhance the therapeutic effects of the other drugs sufficiently to make them effective.
I am not trying to be mysterious by asking this question; my reason is simple. I am currently taking Revlimid only as maintenance post-transplant. One of the options if this maintenance regimen is not effective is to start the full VRD again, since it was effective during induction.
But I hate, hate, hate the dex. So I am trying to see if the just VR would be a viable option.
That is an interesting anecdote. I had never considered that dex might help mitigate side effects. I had always viewed it from the angle that it might be necessary to enhance the therapeutic effects of the other drugs sufficiently to make them effective.
I am not trying to be mysterious by asking this question; my reason is simple. I am currently taking Revlimid only as maintenance post-transplant. One of the options if this maintenance regimen is not effective is to start the full VRD again, since it was effective during induction.
But I hate, hate, hate the dex. So I am trying to see if the just VR would be a viable option.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Maintenance with Revlimid & Velcade but no steriods
My husband did RVD for awhile after his transplant. Then he was reduced to just Velcade for about a year. His m-spike started to creep up just a little, so the Revlimid was added back on. No dex.
After about a year, his m-spike increased significantly. His Mayo doc gave him the option of RVD (with increased doses of all), or switching to one of the newly approved drugs. It has been 3 months now, and his m-spike has remained unchanged.
My husband wants to get as much use out of the RVD as possible before switching. One reason for that is because he now only goes to the cancer center once a week for sub q [subcutaneous] Velcade, and the new drugs would have been going 2 days in a row every week. That would have been harder to work into his work schedule.
After about a year, his m-spike increased significantly. His Mayo doc gave him the option of RVD (with increased doses of all), or switching to one of the newly approved drugs. It has been 3 months now, and his m-spike has remained unchanged.
My husband wants to get as much use out of the RVD as possible before switching. One reason for that is because he now only goes to the cancer center once a week for sub q [subcutaneous] Velcade, and the new drugs would have been going 2 days in a row every week. That would have been harder to work into his work schedule.
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Maintenance with Revlimid & Velcade but no steriods
I dropped the dex after consulting with my oncologist because I have glaucoma also, and it was raising the pressure in me eyes. So far I have not seen any difference except the back pain and stiffness have come back.
So I would discuss this with your doctor because everyone is different.
So I would discuss this with your doctor because everyone is different.
-
bd4142
Re: Maintenance with Revlimid & Velcade but no steriods
Rumnting,
Is the dosage post-transplant for the three drugs the same as it was during induction?
Is the dosage post-transplant for the three drugs the same as it was during induction?
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Maintenance with Revlimid & Velcade but no steriods
Goldmine,
The dex isn't as high of dose. His dex is, I believe, 20 mg once a week. His induction was 40 mg twice a week. His Velcade is once a week. His Revlimid is 25 mg every day (these are all 3 weeks on, one week off). Yes, he hates dex, and the higher dose of Revlimid definitely makes him more fatigued.
The dex isn't as high of dose. His dex is, I believe, 20 mg once a week. His induction was 40 mg twice a week. His Velcade is once a week. His Revlimid is 25 mg every day (these are all 3 weeks on, one week off). Yes, he hates dex, and the higher dose of Revlimid definitely makes him more fatigued.
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Maintenance with Revlimid & Velcade but no steriods
Goldmine,
Those last doses I told you are what he is on currently. The RVD that he used, starting a couple months after the transplant, were definitely at a lower dose than the induction was. The Revlimid was 10 mg.
Those last doses I told you are what he is on currently. The RVD that he used, starting a couple months after the transplant, were definitely at a lower dose than the induction was. The Revlimid was 10 mg.
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Maintenance with Revlimid & Velcade but no steriods
Andrew -- This is a question that cannot be easily answered in a forum like this one, and without a lot more info on your specific situation.That being said, I was at the extreme end of the scale when diagnosed, 17P del, IgG kappa, hip and spinal bones looked like Swiss cheese, massive systemic infection. All the experts agreed that death was imminent. That was in January of 2013.
Despite that dire diagnosis, my oncologist / hematologist put me on the usual DRV (based on some of the other responses I think I'd better stipulate that normal meant 40 mg / week of dex, which I broke up in to two 20 mg doses over a two day period -- 40 mgs in one day was way more than my body could tolerate.)
I responded miraculously and in May of last year was at City of Hope in CA for a transplant. Again, I responded miraculously and, as a result of a virtually unknown study from Europe that my oncologist at COH knew about (specifically relative to 17P deletion myeloma), we opted to put me on a regimen of just Velcade and dex [20 mg / week].
Once again, I responded miraculously and by the first of July my doctor and I decided to take me off all meds. Today all off my CBC numbers are within normal ranges, all but RBC and MCV. I'm told that these counts will probably never return to normal ranges (I would dearly love to prove them wrong
) Oh, and M-protein cannot even be measured. In case you haven't already discerned this, I was never returned to treatment with Revlimid -- again something for which I've been incredibly grateful!!! Revlimid and I never got along well.
Unlike some of the other respondents here, I never experienced a problem with receiving Velcade without the dex for the last 6 week period. However, I think I would be remiss to not point out that during the transplant experience, I had discovered lorazepam [Ativan] to be a miracle, and I don't say that lightly because I'm someone who had never done any drugs other than some very occasional OTC NSAIDS -- well, yeah OK and the obligatory cannabis back in the early 70's. Even now I occasionally take a lorazepam ...
While I'm a very strong advocate of doing your own research, I cannot recommend strongly enough that you consult with and discuss your options with your oncologist (whom I really hope is also a hematologist) and, perhaps, even get a second opinion. My doctor was absolutely intent on putting me on RVD post transplant and would have done so if not for the study presented to him from the oncologist at COH.
Clearly, this was the correct decision for me. Unfortunately, myeloma is very cunning and baffling, so this may not be appropriate for you at all.
Best of Luck
and Aloha
Daniel
Despite that dire diagnosis, my oncologist / hematologist put me on the usual DRV (based on some of the other responses I think I'd better stipulate that normal meant 40 mg / week of dex, which I broke up in to two 20 mg doses over a two day period -- 40 mgs in one day was way more than my body could tolerate.)
I responded miraculously and in May of last year was at City of Hope in CA for a transplant. Again, I responded miraculously and, as a result of a virtually unknown study from Europe that my oncologist at COH knew about (specifically relative to 17P deletion myeloma), we opted to put me on a regimen of just Velcade and dex [20 mg / week].
Once again, I responded miraculously and by the first of July my doctor and I decided to take me off all meds. Today all off my CBC numbers are within normal ranges, all but RBC and MCV. I'm told that these counts will probably never return to normal ranges (I would dearly love to prove them wrong
) Oh, and M-protein cannot even be measured. In case you haven't already discerned this, I was never returned to treatment with Revlimid -- again something for which I've been incredibly grateful!!! Revlimid and I never got along well.Unlike some of the other respondents here, I never experienced a problem with receiving Velcade without the dex for the last 6 week period. However, I think I would be remiss to not point out that during the transplant experience, I had discovered lorazepam [Ativan] to be a miracle, and I don't say that lightly because I'm someone who had never done any drugs other than some very occasional OTC NSAIDS -- well, yeah OK and the obligatory cannabis back in the early 70's. Even now I occasionally take a lorazepam ...
While I'm a very strong advocate of doing your own research, I cannot recommend strongly enough that you consult with and discuss your options with your oncologist (whom I really hope is also a hematologist) and, perhaps, even get a second opinion. My doctor was absolutely intent on putting me on RVD post transplant and would have done so if not for the study presented to him from the oncologist at COH.
Clearly, this was the correct decision for me. Unfortunately, myeloma is very cunning and baffling, so this may not be appropriate for you at all.
Best of Luck
and Aloha
Daniel
-
DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
19 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects