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Re: Velcade or Revlimid maintenance therapy?
Understood Mark. Also glad you are exploring something like a 10mg dose approach. Wishing you good success.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Velcade or Revlimid maintenance therapy?
I have been on maintenance with Velcade for nearly 5 years. For the past two it has been a shot once every 2 weeks accompanied by 8 mg of dex. I continue to be in a remissive state.
I should add that I have not had an ASCT.
I reached a CR with VRD [Velcade, Revlimid, dex] which I took for about 10 cycles (initially weekly injections of Velcade accompanied with 40 mg of dex, 10 mg of Revlimid - on 21 days off 7.) The Velcade was then changed to subcutaneous and changed to once every 2 weeks. The dex was gradually backed down from 40 to 20 to 16 and then 8. Revlimid was dropped 2 years ago.
Ron
I should add that I have not had an ASCT.
I reached a CR with VRD [Velcade, Revlimid, dex] which I took for about 10 cycles (initially weekly injections of Velcade accompanied with 40 mg of dex, 10 mg of Revlimid - on 21 days off 7.) The Velcade was then changed to subcutaneous and changed to once every 2 weeks. The dex was gradually backed down from 40 to 20 to 16 and then 8. Revlimid was dropped 2 years ago.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Velcade or Revlimid maintenance therapy?
Ron, that is such fantastic news. Does your doctor check for MRD with you?
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Velcade or Revlimid maintenance therapy?
Ron, this is indeed fantastic news. Your comments and story was an inspiration to me when I first found the Beacon. Glad to see things are still doing well for you with your approach!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Velcade or Revlimid maintenance therapy?
Alex,
I have had only one BMB and that was back when I was diagnosed in Feb 2009.
I suspect that I have some residual disease but not sure that means a whole lot 5 years out.
My multiple myeloma is tracked with the serum free light chain (sFLC) assay which shows me in the normal range. I have had an M spike that bounces between -0- and 0.2, so there is a hint of the disease at a low level. As my posts have indicated, I am very active physically as I am a cyclist and have logged in 3,000 miles so far this year.
I am having a setback but it is unrelated to my multiple myeloma, as I have a bicuspid aortic valve that will be replaced later this month. With multiple myeloma the biggest risk I face is the danger of infection. I will be getting an infusion of IVIG the day before the surgery and be taking a short holiday from the dex and Velcade until I recover.
Ron
I have had only one BMB and that was back when I was diagnosed in Feb 2009.
I suspect that I have some residual disease but not sure that means a whole lot 5 years out.
My multiple myeloma is tracked with the serum free light chain (sFLC) assay which shows me in the normal range. I have had an M spike that bounces between -0- and 0.2, so there is a hint of the disease at a low level. As my posts have indicated, I am very active physically as I am a cyclist and have logged in 3,000 miles so far this year.
I am having a setback but it is unrelated to my multiple myeloma, as I have a bicuspid aortic valve that will be replaced later this month. With multiple myeloma the biggest risk I face is the danger of infection. I will be getting an infusion of IVIG the day before the surgery and be taking a short holiday from the dex and Velcade until I recover.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Velcade or Revlimid maintenance therapy?
Earlier in this thread, Multibilly mentioned that having to have Velcade injections at a doctor's office seemed somewhat burdensome as compared to taking a Revlimid pill. He was heartened, however, by the thought that he was advised by his doctor that he himself could administer the Velcade subq at home.
I get a Velcade injection at my doctor's office once a week. Prior to the injection, I get a blood test to ensure that my blood counts are in order. It usually takes about fifteen minutes for the results to be delivered and only after review by staff do the nurses get the green light to go ahead with the injection.
So, I am wondering about injections of Velcade at home. How would that work with respect to the obligatory blood test? Is the suggestion that this test is superfluous?
I get a Velcade injection at my doctor's office once a week. Prior to the injection, I get a blood test to ensure that my blood counts are in order. It usually takes about fifteen minutes for the results to be delivered and only after review by staff do the nurses get the green light to go ahead with the injection.
So, I am wondering about injections of Velcade at home. How would that work with respect to the obligatory blood test? Is the suggestion that this test is superfluous?
Re: Velcade or Revlimid maintenance therapy?
MarKV
I have been on sc Velcade for 14 months, initially weekly with steriod and alkylator,, then without alkylator every other week when peripheral neuropathy became an issue. The PN seems to affect each person differently. I know it is still there but it is not unbearable.
Since Revlimid based therapy will be next line for me, where it seems maintenance is involved. I raised the issue of secondary cancers with the myeloma specialist and was told the risks are only when it is given with certain other chemotherapy agents.
In the multiple myeloma game where a specialist unit takes a particular defined approach to treatment you have to accept that each specialist will employ their own experience and philosophy to treatment regimes, Until we have a universal consensus on treatment regimes,based on individual characteristics of the disease and genetics of each patient we will have to rely on ourselves to understand and question so we can make the best informed decisions.
I have been on sc Velcade for 14 months, initially weekly with steriod and alkylator,, then without alkylator every other week when peripheral neuropathy became an issue. The PN seems to affect each person differently. I know it is still there but it is not unbearable.
Since Revlimid based therapy will be next line for me, where it seems maintenance is involved. I raised the issue of secondary cancers with the myeloma specialist and was told the risks are only when it is given with certain other chemotherapy agents.
In the multiple myeloma game where a specialist unit takes a particular defined approach to treatment you have to accept that each specialist will employ their own experience and philosophy to treatment regimes, Until we have a universal consensus on treatment regimes,based on individual characteristics of the disease and genetics of each patient we will have to rely on ourselves to understand and question so we can make the best informed decisions.
Re: Velcade or Revlimid maintenance therapy?
Hello Mrozdav,
There are two really helpful threads here in the forum related to self-injecting Velcade that are worth looking at. In this one,
"Self-injecting Velcade - my experience" (started Aug 17, 2014)
Coop, who self-injects Velcade with his doctor's blessings, says that he gets a CBC done only every 2 or 3 months. Also, in this thread,
"Self-injecting Velcade - anybody else?" (started Oct 25, 2014)
Dr. Landau comments that she thinks the biggest issue with self-injecting Velcade is that the drug needs to be reconstituted, and that may be difficult for some people to learn to do in a reliable, safe way. She did not raise the issue of low blood cell counts, or other potential side effects, as being a concern (which, to be honest, surprised me a little).
There are two really helpful threads here in the forum related to self-injecting Velcade that are worth looking at. In this one,
"Self-injecting Velcade - my experience" (started Aug 17, 2014)
Coop, who self-injects Velcade with his doctor's blessings, says that he gets a CBC done only every 2 or 3 months. Also, in this thread,
"Self-injecting Velcade - anybody else?" (started Oct 25, 2014)
Dr. Landau comments that she thinks the biggest issue with self-injecting Velcade is that the drug needs to be reconstituted, and that may be difficult for some people to learn to do in a reliable, safe way. She did not raise the issue of low blood cell counts, or other potential side effects, as being a concern (which, to be honest, surprised me a little).
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JimNY
Re: Velcade or Revlimid maintenance therapy?
Thank you, JimNY, this information was quite interesting.
I do not know the details of Coop's treatment plans, which may account for his getting his blood test only every two or three months. He may be on maintenance only, with Velcade his only medication.
In my own case, I was on Revlimid-dexamethasone (Rd) for about eight or nine months, decided against a stem cell transplant (SCT), and now am on the same dosage of Rd in addition to Velcade and will be going through a total of four rounds with this new regimen before maintenance, possibly on Velcade alone.
Because I am now on all three meds, there may be greater concern about my blood counts getting too low, particularly my neutrophils, leading me to greater susceptibility to respiratory infections – which I dread. I have read elsewhere, however, that the recommendation is that a CBC test should always be done before a Velcade injection. Until now, I thought this was standard procedure.
Since I may be getting lots of Velcade injections in the future, I would like to learn how frequently other participants in the forum also get blood tests directly before the injection. I am concerned about preserving my veins, perhaps a minor issue in the grand scheme of things.
Maybe I should just add that in my own circumstances getting the Velcade injection at my doctor's office is not a problem. Her office is near my home; the lab is part of the office; a pharmacist, who apparently prepares the contents of the syringe, is in the same building. The large chemo room is relatively pleasant and never crowded when I am there.
The only negative about the Velcade injections, so far, that occurs to me is that they would definitely interfere with any planned vacation plans to travel abroad for an extended time. But we will cross that bridge when the time comes.
Thank you again for your prompt response.
I do not know the details of Coop's treatment plans, which may account for his getting his blood test only every two or three months. He may be on maintenance only, with Velcade his only medication.
In my own case, I was on Revlimid-dexamethasone (Rd) for about eight or nine months, decided against a stem cell transplant (SCT), and now am on the same dosage of Rd in addition to Velcade and will be going through a total of four rounds with this new regimen before maintenance, possibly on Velcade alone.
Because I am now on all three meds, there may be greater concern about my blood counts getting too low, particularly my neutrophils, leading me to greater susceptibility to respiratory infections – which I dread. I have read elsewhere, however, that the recommendation is that a CBC test should always be done before a Velcade injection. Until now, I thought this was standard procedure.
Since I may be getting lots of Velcade injections in the future, I would like to learn how frequently other participants in the forum also get blood tests directly before the injection. I am concerned about preserving my veins, perhaps a minor issue in the grand scheme of things.
Maybe I should just add that in my own circumstances getting the Velcade injection at my doctor's office is not a problem. Her office is near my home; the lab is part of the office; a pharmacist, who apparently prepares the contents of the syringe, is in the same building. The large chemo room is relatively pleasant and never crowded when I am there.
The only negative about the Velcade injections, so far, that occurs to me is that they would definitely interfere with any planned vacation plans to travel abroad for an extended time. But we will cross that bridge when the time comes.
Thank you again for your prompt response.
Re: Velcade or Revlimid maintenance therapy?
Mrozdav
I get full bloods taken each time before Velcade is given through an injection by a nurse. If I have an infection, or there are concerns about the blood values usually a decision will be made by the doctor as to whether to proceed e.g. if bloods suggest infection.
Edna
I get full bloods taken each time before Velcade is given through an injection by a nurse. If I have an infection, or there are concerns about the blood values usually a decision will be made by the doctor as to whether to proceed e.g. if bloods suggest infection.
Edna
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