I am wondering whether there are non-stem cell transplant (SCT) forum members who are doing maintenance with only Velcade.
If so, how frequently do you get your injections and at what dosage? And do you know why this particular maintenance treatment was chosen over others?
Forums
Re: Velcade maintenance for non-SCT patients
Okay, by the absence of any responses, it doesn't look as if there are non-stem cell transplant myeloma posters who are on Velcade maintenance alone.
So, is anyone, even if you have had a stem cell transplant, on Velcade maintenance alone? I am scheduled to start such a regimen but do not know why it was selected over others (other than the fact that Velcade is especially effective for t(4;14) patients). I will discuss this with my oncologist, but before that would like to have some idea about just how unusual Velcade alone for maintenance is. I am thinking that it is rather unusual.
So, is anyone, even if you have had a stem cell transplant, on Velcade maintenance alone? I am scheduled to start such a regimen but do not know why it was selected over others (other than the fact that Velcade is especially effective for t(4;14) patients). I will discuss this with my oncologist, but before that would like to have some idea about just how unusual Velcade alone for maintenance is. I am thinking that it is rather unusual.
Re: Velcade maintenance for non-SCT patients
I have been diagnosed with oligosecretory multiple myeloma with genetic markers for high risk multiple myeloma. Although I was eligible for a stem cell transplant, my physician opted not to do one. I was put on a treatment of melphalan, prednisone, and Velcade injections (twice per week) for a period of six weeks. This was not an easy treatment to endure. Thereafter, for several months, I was put on Velcade injections twice per week. After about three months, my tests showed no disease present. I was then put on a “maintenance” regimen of Velcade injections every other week.
I have been on Velcade for about two years now. I find Velcade to be a very tolerable drug, that is, I have experienced no nausea, no asthenia, no malaise, no peripheral neuropathy, nor the diarrhea that many people experience. Unique to me, and probably not a concern to you or anyone else, I do have some issue at the time of injection with discomfort in my cervical vertebrae. Orthopedic surgeon believes this is because this area of my anatomy has been weakened because of extensive surgery and instrumentation due to damage caused by the myeloma.
But, as I say, this would not be a concern for you. Again, I found Velcade to be a very tolerable drug. This month I will have been receiving Velcade injections for a period of two years. I sleep well, have good energy, and although I am 78 years old, I have good endurance and manage to exercise, take care of grandchildren, prepare large dinners for family, and am on my feet for as much as 10 hours some days.
As for the “maintenance”, I think the scientific evidence of its being very effective is scant. But, I have opted to follow the advise of my oncologist, whom I greatly respect, and remain on Velcade.
My best wishes to you. I’m sure you’ll do well on Velcade – most people do.
I have been on Velcade for about two years now. I find Velcade to be a very tolerable drug, that is, I have experienced no nausea, no asthenia, no malaise, no peripheral neuropathy, nor the diarrhea that many people experience. Unique to me, and probably not a concern to you or anyone else, I do have some issue at the time of injection with discomfort in my cervical vertebrae. Orthopedic surgeon believes this is because this area of my anatomy has been weakened because of extensive surgery and instrumentation due to damage caused by the myeloma.
But, as I say, this would not be a concern for you. Again, I found Velcade to be a very tolerable drug. This month I will have been receiving Velcade injections for a period of two years. I sleep well, have good energy, and although I am 78 years old, I have good endurance and manage to exercise, take care of grandchildren, prepare large dinners for family, and am on my feet for as much as 10 hours some days.
As for the “maintenance”, I think the scientific evidence of its being very effective is scant. But, I have opted to follow the advise of my oncologist, whom I greatly respect, and remain on Velcade.
My best wishes to you. I’m sure you’ll do well on Velcade – most people do.
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Demiplie
Re: Velcade maintenance for non-SCT patients
Demiplie, Thank you so much for taking the time to respond. I am encouraged by your experience. I wish you well, too.
Re: Velcade maintenance for non-SCT patients
I would like to respond to your question ... but I HAVE had a transplant (February 2015).
My myeloma specialist and my oncologist BOTH suggested maintenance Velcade for me. I have the del(17p) abnormality, which puts me into the high-risk category. My doctors feel that Velcade will be the best chemo choice for me because of the del(17p) factor. I began maintenance immediately after my Day 100 post transplant checkup. I'm not taking any dex with the Velcade injections. I will receive the Velcade (subQ) every other week.
My myeloma specialist and my oncologist BOTH suggested maintenance Velcade for me. I have the del(17p) abnormality, which puts me into the high-risk category. My doctors feel that Velcade will be the best chemo choice for me because of the del(17p) factor. I began maintenance immediately after my Day 100 post transplant checkup. I'm not taking any dex with the Velcade injections. I will receive the Velcade (subQ) every other week.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Velcade maintenance for non-SCT patients
Hi CabinGirl,
Did you have RVD for your induction therapy? Was there any discussion of something other than Velcade for your maintenance?
Did you have RVD for your induction therapy? Was there any discussion of something other than Velcade for your maintenance?
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KLR - Name: KLR
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 58
Re: Velcade maintenance for non-SCT patients
KLR,
Yes, I had 4 rounds of Revlimid, Velcade, and dex, which did bring my numbers down significantly. I took one month off to get the drugs out of my system and then proceeded to harvest the stem cells and then had my transplant. I was at Mayo (Rochester) for a total of 6 weeks and did my transplant as an outpatient.
I'm now on Velcade every other week and Zometa once a month.
And to answer your second question, Velcade was the first choice of maintenance therapy by my Mayo specialist, as some studies have shown that Velcade appears to be effective against the del(17p) abnormality.
Yes, I had 4 rounds of Revlimid, Velcade, and dex, which did bring my numbers down significantly. I took one month off to get the drugs out of my system and then proceeded to harvest the stem cells and then had my transplant. I was at Mayo (Rochester) for a total of 6 weeks and did my transplant as an outpatient.
I'm now on Velcade every other week and Zometa once a month.
And to answer your second question, Velcade was the first choice of maintenance therapy by my Mayo specialist, as some studies have shown that Velcade appears to be effective against the del(17p) abnormality.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Velcade maintenance for non-SCT patients
Although this is an old thread, I have a similar question.
I have 7 more weeks of induction therapy with RVd (Revlimid, Velcade, dexamethasone) and asked my specialist what she would be recommending for maintenance.
As background: I have no cytogenetic information as my bone marrow biopsy came back <5% plasma cells and so no FISH data. My PET/CT was a false negative, and it was explained to me that my lesions just do not attract the sugar. My lambda/kappa ratio has come into normal range, M-spike is not detectable (was scant before), and no more Bence Jones protein either. My multiple myeloma started with a plasmacytoma in bone.
My specialist recommended Velcade, though I was fully expecting to hear Revlimid and I argued for the latter based on hating the injections and concern about neuropathy (have increasing tingling now, which is manageable, but don't want to move to a painful place with this.) Failed to probe on the whys but asked if that is what she recommends for higher risk patients and she said yes. Perhaps since we don't know where I fall, it's erring on the side of assuming the worst. Will follow up with her on this.
That said, I wonder if the scales don't tip more towards Revlimid for the convenience factor - which is why I want it - and also the neuropathy. Neither of us mentioned Ninlaro: me because there isn't a lot of data yet, and perhaps the same reason for her (little clinical experience), not sure.
If a reduced dosage would mean my chance of nasty neuropathy would diminish, and it's truly a smarter maintenance choice for me, then certainly I'd buck up and drag my needle-phobic body into my local oncologist for a bi-weekly injection.
Apologies for the length of this post. I'm curious of others thoughts on Revlimid vs Velcade maintenance ... and experiences with Velcade maintenance.
Thanks!
I have 7 more weeks of induction therapy with RVd (Revlimid, Velcade, dexamethasone) and asked my specialist what she would be recommending for maintenance.
As background: I have no cytogenetic information as my bone marrow biopsy came back <5% plasma cells and so no FISH data. My PET/CT was a false negative, and it was explained to me that my lesions just do not attract the sugar. My lambda/kappa ratio has come into normal range, M-spike is not detectable (was scant before), and no more Bence Jones protein either. My multiple myeloma started with a plasmacytoma in bone.
My specialist recommended Velcade, though I was fully expecting to hear Revlimid and I argued for the latter based on hating the injections and concern about neuropathy (have increasing tingling now, which is manageable, but don't want to move to a painful place with this.) Failed to probe on the whys but asked if that is what she recommends for higher risk patients and she said yes. Perhaps since we don't know where I fall, it's erring on the side of assuming the worst. Will follow up with her on this.
That said, I wonder if the scales don't tip more towards Revlimid for the convenience factor - which is why I want it - and also the neuropathy. Neither of us mentioned Ninlaro: me because there isn't a lot of data yet, and perhaps the same reason for her (little clinical experience), not sure.
If a reduced dosage would mean my chance of nasty neuropathy would diminish, and it's truly a smarter maintenance choice for me, then certainly I'd buck up and drag my needle-phobic body into my local oncologist for a bi-weekly injection.
Apologies for the length of this post. I'm curious of others thoughts on Revlimid vs Velcade maintenance ... and experiences with Velcade maintenance.
Thanks!
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Velcade maintenance for non-SCT patients
Hello Moonscape:
I cannot comment directly and with good authority on your direct question, as to why Velcade would be better than Revlimid in your case for maintenance. I can add that based on the info you posted, you are definitely not "plain vanilla" multiple myeloma, and that the studies where they find that Revlimid is the best applies more to plain vanilla multiple myeloma. Your doctor may well have a very valid point based on his/her experience, but I suspect that there may not be an authoritative study on the exact question to explain why.
I will add that, particularly if you are concerned with Velcade maintenance, that except for peripheral neuropathy, the side effect profile is probably better for Velcade; and more directly, for Ninlaro (ixazomib), the issue of peripheral neuropathy, although not eliminated, I think has been greatly reduced. Further, to give you my speculation, Ninlaro I think will turn out to be at least a little bit more active than Velcade.
Bottom line: Ask, as an option, if Ninlaro is available for you for maintenance as an option. If it is, consider it. If you have to go with Velcade, it may be the case that the inconvenience is somewhat temporary, until Ninlaro is approved.
In any case, it sounds to me like you have a good doctor. Close monitoring of the maintenance will reveal its effectiveness. If your doctor is on top of it, and he (she) sees early signals that Velcade is not working, they will pivot over to Revlimid, in any case.
Good luck to you.
I cannot comment directly and with good authority on your direct question, as to why Velcade would be better than Revlimid in your case for maintenance. I can add that based on the info you posted, you are definitely not "plain vanilla" multiple myeloma, and that the studies where they find that Revlimid is the best applies more to plain vanilla multiple myeloma. Your doctor may well have a very valid point based on his/her experience, but I suspect that there may not be an authoritative study on the exact question to explain why.
I will add that, particularly if you are concerned with Velcade maintenance, that except for peripheral neuropathy, the side effect profile is probably better for Velcade; and more directly, for Ninlaro (ixazomib), the issue of peripheral neuropathy, although not eliminated, I think has been greatly reduced. Further, to give you my speculation, Ninlaro I think will turn out to be at least a little bit more active than Velcade.
Bottom line: Ask, as an option, if Ninlaro is available for you for maintenance as an option. If it is, consider it. If you have to go with Velcade, it may be the case that the inconvenience is somewhat temporary, until Ninlaro is approved.
In any case, it sounds to me like you have a good doctor. Close monitoring of the maintenance will reveal its effectiveness. If your doctor is on top of it, and he (she) sees early signals that Velcade is not working, they will pivot over to Revlimid, in any case.
Good luck to you.
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JPC - Name: JPC
Re: Velcade maintenance for non-SCT patients
I think I fit the original posters query - sorry for the delayed reply.
Background - IgG kappa, diagnosed in November 2013 with partially collapsed vertebrae and lesions on many bones. M-spike 2.6 g/dl, kappa about 125 mg/l and kappa / lambda ratio around 22. Standard-risk cytogenetics
4 cycles Velcade, cyclophosphamide, and dexamethasone (VCD, CyBorD), 4 cycles Revlimid, Velcade, and dexamethasone (RVD), and into very good partial response.
No stem cell transplant.
Thereafter, post November 2014, on single agent Velcade maintenance (1 subcutaneous injection every 2 weeks). M-spike steady around 0.4 to 0.6. Light chains normal (ish). Tested every 3 months.
Generally tolerate the medication well, have a full(ish) life on the work and family front. Not sure about how long the Velcade maintenance will go on for, but happy and grateful that it seems to be doing its job at the moment
Waiting anxiously for that CAR-T cell Immunotherapy silver bullet!
Robin
Background - IgG kappa, diagnosed in November 2013 with partially collapsed vertebrae and lesions on many bones. M-spike 2.6 g/dl, kappa about 125 mg/l and kappa / lambda ratio around 22. Standard-risk cytogenetics
4 cycles Velcade, cyclophosphamide, and dexamethasone (VCD, CyBorD), 4 cycles Revlimid, Velcade, and dexamethasone (RVD), and into very good partial response.
No stem cell transplant.
Thereafter, post November 2014, on single agent Velcade maintenance (1 subcutaneous injection every 2 weeks). M-spike steady around 0.4 to 0.6. Light chains normal (ish). Tested every 3 months.
Generally tolerate the medication well, have a full(ish) life on the work and family front. Not sure about how long the Velcade maintenance will go on for, but happy and grateful that it seems to be doing its job at the moment
Waiting anxiously for that CAR-T cell Immunotherapy silver bullet!
Robin
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