What is your Revlimid, Velcade, and dexamethasone (RVD) maintenance?
My mom is currently on 3 weeks one week off, with prednisone every other day. She recently had a terrible case of pneumonia, which was really scary. She didn't get sick for a whole year, and then less than three months after changing from dex to prednisone, she was in the hospital for a week with pneumonia. The doctor is going to get her on antibodies.
We are not sure where to go from here. The specialist and generalist are of differing opinions. Can you please share your RVD maintenance and how long you've been on it?
Thank you.
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Re: What is your RVD maintenance?
1 shot Velcade, 600 mg Cytoxan, 16 mg dex on Tuesdays, followed by 1 shot Velcade and 16 mg of dex on Friday. I do this for 2 weeks, then a week off. Been doing this for 5 months.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: What is your RVD maintenance?
I take a Velcade injection every other week with 12 mgs. IV dex. I also take 5mgs Revlimid on a 21 day cycle. Had SCT October, 2014. Began maintenance in March, had appendectomy in early April, which interrupted maintenance for about 1 week. Then went back on the maintenance regimen.
Re: What is your RVD maintenance?
Don't know if this is applicable as it's just 'R' rather than 'RVD', but I take 10 mg of Revlimid daily, every day. This has had no effect on my well being that I can perceive.
If they'd wanted to add the dex to this, I likely would have refused.
If they'd wanted to add the dex to this, I likely would have refused.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: What is your RVD maintenance?
Greetings, my post transplant maintenance is 10mg Revlimid on 21 days then 7 days off. So far only slight fatigue and a minor rash which is mostly clear.
Zometa infusion is every 90 days. No Velcade or dex.
Best! BN
Zometa infusion is every 90 days. No Velcade or dex.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: What is your RVD maintenance?
Hi hopeful27,
I'm a little confused by your question. Normally RVD would be given together during induction treatment and/or consolidation treatment, not maintenance treatment. So do you mean what maintenance treatment do people get after having gotten RVD in an earlier phase?
If that's what you mean, I am getting 10 mg Revlimid daily for maintenance treatment. I've been getting Revlimid maintenance for 22 28-day cycles now, with 4 more cycles planned, which will give me 2 years of maintenance treatment. Earlier in my treatment, my dose was 15 mg, but it was reduced to 10 mg because of problems with low platelets and WBC.
Best wishes to your Mom.
Mike
I'm a little confused by your question. Normally RVD would be given together during induction treatment and/or consolidation treatment, not maintenance treatment. So do you mean what maintenance treatment do people get after having gotten RVD in an earlier phase?
If that's what you mean, I am getting 10 mg Revlimid daily for maintenance treatment. I've been getting Revlimid maintenance for 22 28-day cycles now, with 4 more cycles planned, which will give me 2 years of maintenance treatment. Earlier in my treatment, my dose was 15 mg, but it was reduced to 10 mg because of problems with low platelets and WBC.
Best wishes to your Mom.
Mike
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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: What is your RVD maintenance?
Hello Hopeful27,
I have the IgG kappa myeloma and I just started my 7th 4-week cycle of the RVD Induction treatment. I am hoping to start my maintenance phase soon. However, my kappa reading, the main marker in my case, seems to have leveled off at around 21. ALL the experts, including my oncologist agree, that I need to achieve a "deep response", i.e. the kappa FLC's down in the single digit range.
My side effects seem to be getting more severe as the weeks of this chemo are wearing me down and also because of a flu attack about 10 weeks ago. I have been coping with these side effects a lot better after I stopped going out in the stormy weather and also by avoiding any contact with friends and family that may be sick. Also, I seem to feel more drowsy and tired for a lot longer if I do any strenuous exercise during the two days after the Velcade shot.
My oncologist has suggested that my maintenance regimen would consist of RVD; about half the Revlimid I take now (15 mg daily, 3 weeks ON and 1 week OFF), reduced amount of dex (8 mg every week instead of the current 20 mg) and a less frequent Velcade (currently once a week). I assume that I would need the full 20 mg dex on the days I would get the Velcade shot. As Mike B had pointed out in another discussion, the Velcade can make you extremely drowsy without the dex.
However, I know of quite a few other myeloma patients who are on 'Revlimid only maintenance' just like Mike B, nearly all taking dex once a week to increase its effectiveness. One of them refuses to switch from the old thalidomide as it has been working for her for 15 years.
Hello Mike B,
Has your myeloma team decided to limit your maintenance for only 2 years? Or stop the Revlimid maintenance and monitor? Also, isn't a weekly dose of dex part of your maintenance regimen? There was a lot of discussion in another thread about just a 8 - 12 mg weekly dex being adequate to supplement the Revlimid Maintenance.
I had understood that the maintenance treatment would continue forever, as myeloma is not curable. I remember reading that you had a sCR (stringent complete rResponse), did not take any chemo for a few years, and had a relapse a few years after your ASCT. I am not sure how your "relapse" was detected.
K_Shash
I have the IgG kappa myeloma and I just started my 7th 4-week cycle of the RVD Induction treatment. I am hoping to start my maintenance phase soon. However, my kappa reading, the main marker in my case, seems to have leveled off at around 21. ALL the experts, including my oncologist agree, that I need to achieve a "deep response", i.e. the kappa FLC's down in the single digit range.
My side effects seem to be getting more severe as the weeks of this chemo are wearing me down and also because of a flu attack about 10 weeks ago. I have been coping with these side effects a lot better after I stopped going out in the stormy weather and also by avoiding any contact with friends and family that may be sick. Also, I seem to feel more drowsy and tired for a lot longer if I do any strenuous exercise during the two days after the Velcade shot.
My oncologist has suggested that my maintenance regimen would consist of RVD; about half the Revlimid I take now (15 mg daily, 3 weeks ON and 1 week OFF), reduced amount of dex (8 mg every week instead of the current 20 mg) and a less frequent Velcade (currently once a week). I assume that I would need the full 20 mg dex on the days I would get the Velcade shot. As Mike B had pointed out in another discussion, the Velcade can make you extremely drowsy without the dex.
However, I know of quite a few other myeloma patients who are on 'Revlimid only maintenance' just like Mike B, nearly all taking dex once a week to increase its effectiveness. One of them refuses to switch from the old thalidomide as it has been working for her for 15 years.
Hello Mike B,
Has your myeloma team decided to limit your maintenance for only 2 years? Or stop the Revlimid maintenance and monitor? Also, isn't a weekly dose of dex part of your maintenance regimen? There was a lot of discussion in another thread about just a 8 - 12 mg weekly dex being adequate to supplement the Revlimid Maintenance.
I had understood that the maintenance treatment would continue forever, as myeloma is not curable. I remember reading that you had a sCR (stringent complete rResponse), did not take any chemo for a few years, and had a relapse a few years after your ASCT. I am not sure how your "relapse" was detected.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: What is your RVD maintenance?
Hi K_Shash,
(Not to hijack the thread from hopefu27, but I do want to answer the questions you asked me.)
I am in a clinical trial, where the protocol calls for 2 years of Revlimid-only maintenance. No dex. Fortunately, this is still part of my "first-line" therapy; I have not relapsed. I had RVD induction, ASCT, and RVD consolidation before getting into the maintenance phase.
Whether to continue Revlimid maintenance after the 2-year clinical trial protocol is finished is a great question. I have not had that discussion with my myeloma specialist yet, but I'm sure that's something we'll talk about pretty soon.
As of last July I was in sCR and MRD negative. My blood numbers continue to look good, except that the FLC kappa-lambda ratio bounces around some, sometimes being slightly high. I think my doctor will do another BMB in July to see how things look in the bone marrow at that point, 1 year after I hit sCR and MRD negative.
I'm sorry to read that your RVD treatments are getting progressively more difficult and that your kappa FLC level seems to have plateaued. Hang in there. I'm sending good wishes your way.
Mike
(Not to hijack the thread from hopefu27, but I do want to answer the questions you asked me.)
I am in a clinical trial, where the protocol calls for 2 years of Revlimid-only maintenance. No dex. Fortunately, this is still part of my "first-line" therapy; I have not relapsed. I had RVD induction, ASCT, and RVD consolidation before getting into the maintenance phase.
Whether to continue Revlimid maintenance after the 2-year clinical trial protocol is finished is a great question. I have not had that discussion with my myeloma specialist yet, but I'm sure that's something we'll talk about pretty soon.
As of last July I was in sCR and MRD negative. My blood numbers continue to look good, except that the FLC kappa-lambda ratio bounces around some, sometimes being slightly high. I think my doctor will do another BMB in July to see how things look in the bone marrow at that point, 1 year after I hit sCR and MRD negative.
I'm sorry to read that your RVD treatments are getting progressively more difficult and that your kappa FLC level seems to have plateaued. Hang in there. I'm sending good wishes your way.
Mike
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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: What is your RVD maintenance?
I have only had a stem cell harvest portion completed and will be having the actual transplant after the first of the year. I did reach a complete response from Velcade, given on days 1, 4, 8, and 11. And 40 mg dex once per week on Fridays. So my oncologist and myeloma specialist agreed that it would be ok to be on a maintenance plan until transplant. I also took one month off from all drugs and treatments after the harvest.
What they came up with was Revlimid at 15 mg 21x7, dexamethasone at 20 mg once per week, and Velcade once per week for 4 weeks, then one week off. I have been doing this for 2 months.
What they came up with was Revlimid at 15 mg 21x7, dexamethasone at 20 mg once per week, and Velcade once per week for 4 weeks, then one week off. I have been doing this for 2 months.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: What is your RVD maintenance?
Hi Mike,
Thanks and wish you all the best, with the tests planned for July. your post indicates that your SCR was confirmed by a BMB, a painful experience I am trying to avoid.
I am sorry that somehow I had jumped to a wrong conclusion that you were on a Maintenance Regimen due to a relapse (as many others have reported to be) .
And continuing with the main subject of this discussion thread by hopeful27:
Thanks George, for sharing your Maintenance Therapy while you wait for the Transplant. I hope all your critical parameters remain stable for the next 6 months or so.
Surprisingly your RVD Maintenance Doses are almost exactly what I am getting during my Induction Therapy! The slight difference is my Velcade shot is given every week without any weeks off. The size of the Velcade shot is calculated per the body mass (area?) of the patient, as I understand the calculation in the paperwork I get from the Chemo Clinic. I wonder if the Dex and Revlimid doses are prescribed according to the patient's weight. That may be the case because I weigh only Around 128 lbs., now. However, it makes me wonder why I am having a harder time coping with the side effects of this regimen now, in the 7th month of this Therapy in spite of such smaller doses.
Initially, I had to take it easy (physical activities) for about 3 days after my Dex and Velcade and I could take long brisk walks (up to 3 miles) and play golf on the 4th day on till the next Dex Velcade. It seems I may be able to manage such an activity only on the 7th day. I am hoping my Maintenance Doses of these drugs would be substantially lower and more manageable.
K_Shash
Thanks and wish you all the best, with the tests planned for July. your post indicates that your SCR was confirmed by a BMB, a painful experience I am trying to avoid.
I am sorry that somehow I had jumped to a wrong conclusion that you were on a Maintenance Regimen due to a relapse (as many others have reported to be) .
And continuing with the main subject of this discussion thread by hopeful27:
Thanks George, for sharing your Maintenance Therapy while you wait for the Transplant. I hope all your critical parameters remain stable for the next 6 months or so.
Surprisingly your RVD Maintenance Doses are almost exactly what I am getting during my Induction Therapy! The slight difference is my Velcade shot is given every week without any weeks off. The size of the Velcade shot is calculated per the body mass (area?) of the patient, as I understand the calculation in the paperwork I get from the Chemo Clinic. I wonder if the Dex and Revlimid doses are prescribed according to the patient's weight. That may be the case because I weigh only Around 128 lbs., now. However, it makes me wonder why I am having a harder time coping with the side effects of this regimen now, in the 7th month of this Therapy in spite of such smaller doses.
Initially, I had to take it easy (physical activities) for about 3 days after my Dex and Velcade and I could take long brisk walks (up to 3 miles) and play golf on the 4th day on till the next Dex Velcade. It seems I may be able to manage such an activity only on the 7th day. I am hoping my Maintenance Doses of these drugs would be substantially lower and more manageable.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
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