Hi all,
My mother was given 8 cycles of Velcade and now she is on Revlimid as her initial maintenance therapy. Before taking Velcade she was on thalidomide for a couple of months. My parents stay in India and the place they stay does not have any myeloma specialist. The doctor (haemato / oncologist) has suggested that he would keep her on 10 mg Revlimid for 3 months and then do all her tests and then again will keep her on 10 mg Revlimid for another 3 months depending on her test results.
I have been following this forum since a year, and from what I read it seems that doctors do not prefer to use Revlimid as maintenance therepy. Also, it seems that those who take Revlimid, take it for 21 days and then are off for next seven days. My mother's doctor has not mentioned of giving a break, and my mother already feels exhausted just after a single dose of Revlimid.
The doctor however has suggested CBC tests every week to monitor platelet counts. Before she was given Velcade, her kappa lambda ratio kept on increasing and she also had a high B2 microglobulin value. So the doctor had decided to give her 8 rounds of Velcade and now on Revlimid maintenance therapy.
So if can anybody please let me know with their experience if its ok to take Revlimid as initial maintenance therapy and continuously without a break.
Forums
Re: Revlimid as initial maintenance therapy
I was put on Revlimid 10mg as maintenance therapy after my stem cell transplant, continuous 1 pill every day with no breaks. I was monitored with a CBC monthly. After about three months I had to take a break because of decreasing white blood cell counts. I was restarted after about a week break and the schedule was changed to be 3 weeks on with 1 week off, which is what most people do.
This is my first month on this new schedule and so far no problems. My WBC is still low but has stabilized. I have no noticeable severe side effects, a little fatigued at times, but nothing like what some of the others on Revlimid on this forum have said they had.
This is my first month on this new schedule and so far no problems. My WBC is still low but has stabilized. I have no noticeable severe side effects, a little fatigued at times, but nothing like what some of the others on Revlimid on this forum have said they had.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Revlimid as initial maintenance therapy
Hello Ruchi,
In the U.S., maintenance therapy is usually done with Revlimid, and I think you'll find that it's usually continuous therapy, meaning one pill every day, day in and day out.
The 21 days out of 28 days dosing of Revlimid is more typically used when Revlimid is being given for what is expected to be a specific period of time, like a specific number of cycles, or until the patient reaches their best possible response to treatment.
Maintenance therapy is one of the areas of controversy right now in the treatment of myeloma. A lot of doctors recommend it for their patients, and their have been important trials that show that maintenance therapy extends how long a patient can go before they relapse. However, not all of those trials have shown that maintenance therapy with Revlimid actually improves how long myeloma patients survive, and all of the trials showed that patients who took Revlimid maintenance therapy had a higher chance of getting another cancer on top of myeloma.
That's why maintenance therapy with Revlimid is controversial.
Here is a list of the articles about maintenance therapy here at this site:
https://myelomabeacon.org/tag/maintenance-therapy/
The one based on a presentation that was given at the recent 2012 ASCO conference is very detailed, while the article by Dr. Vesole is a quicker overview of maintenance therapy controversy.
It sounds like your mother's doctor wants to put your mother on maintenance therapy with Revlimid to either maintain the response she received with her initial therapy, or possibly get a better response. Personally, I don't think that is an unusual recommendation. Not all doctors would necessarily agree with the decision, but many would.
Good luck to you and your mother,
Cheryl
In the U.S., maintenance therapy is usually done with Revlimid, and I think you'll find that it's usually continuous therapy, meaning one pill every day, day in and day out.
The 21 days out of 28 days dosing of Revlimid is more typically used when Revlimid is being given for what is expected to be a specific period of time, like a specific number of cycles, or until the patient reaches their best possible response to treatment.
Maintenance therapy is one of the areas of controversy right now in the treatment of myeloma. A lot of doctors recommend it for their patients, and their have been important trials that show that maintenance therapy extends how long a patient can go before they relapse. However, not all of those trials have shown that maintenance therapy with Revlimid actually improves how long myeloma patients survive, and all of the trials showed that patients who took Revlimid maintenance therapy had a higher chance of getting another cancer on top of myeloma.
That's why maintenance therapy with Revlimid is controversial.
Here is a list of the articles about maintenance therapy here at this site:
https://myelomabeacon.org/tag/maintenance-therapy/
The one based on a presentation that was given at the recent 2012 ASCO conference is very detailed, while the article by Dr. Vesole is a quicker overview of maintenance therapy controversy.
It sounds like your mother's doctor wants to put your mother on maintenance therapy with Revlimid to either maintain the response she received with her initial therapy, or possibly get a better response. Personally, I don't think that is an unusual recommendation. Not all doctors would necessarily agree with the decision, but many would.
Good luck to you and your mother,
Cheryl
Re: Revlimid as initial maintenance therapy
Thank you so much Eric and Cheryl for your reply. It makes me feel better to know that my mother is given treatment which is acceptable and is not something which is unusual.
One of the side effect of Revlimid that she is having is itching in her scalp and some amount of hair loss. Did you guys experience something similar to this? Or do you know of any medication or natural remedy that might help with this?
One of the side effect of Revlimid that she is having is itching in her scalp and some amount of hair loss. Did you guys experience something similar to this? Or do you know of any medication or natural remedy that might help with this?
Re: Revlimid as initial maintenance therapy
Yup, itchy scalp is pretty common with Revlimid:
https://myelomabeacon.org/forum/revlimid-itching-t1223.html
a few tips have been posted there already
https://myelomabeacon.org/forum/revlimid-itching-t1223.html
a few tips have been posted there already
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Garf
Re: Revlimid as initial maintenance therapy
Dear Ruchi,
Revlimid (lenalidomide) maintenance therapy is being used increasingly after high-dose melphalan and stem cell rescue (autologous stem cell transplant) and after initial induction therapy for those who are not eligible or choose not to pursue the high-dose therapy option.
There was a recently published study in the New England Journal of Medicine in which newly-diagnosed, non-transplant myeloma patients were randomly assigned to receive one of 3 treatment strategies: 1) low-dose melphalan, prednisone; 2) low-dose melphalan, prednisone and lenalidomide; or 3) low-dose melphalan, prednisone and lenalidomide followed by lenalidomide maintenance. For the third group of patients, the lenalidomide maintenance was 3 weeks on, 1 week off. In that study, the patients who received lenalidomide maintenance stayed in remission longer. However, an overall survival advantage has not been seen between any of the groups as of yet, likely due to the fact that those assigned to the first 2 groups could go on to receive lenalidomide-based therapy at the time of relpase and respond to it in many instances.
In contrast, in the US study of lenalidomide maintenance after high-dose melphalan and stem cell rescue, there was an overall survival advantage to the use of maintenance. Given the significant impact on the duration of remission, many physicians have started using lenalidomide maintenace after initial induction therapy for non-transplant patients, regardless of what type of induction therapy was initially given (melphalan/prednisone +/- lenalidomide, lenalidomide/dex, bortezomib/dex, lenalidomide/bortezomib/dex, cyclophosphamide/bortezomib/dex, etc).
As such, your mother's treatment is appropriate. However, if your mother continues to struggle with the lenalidomide, you may need to re-evaluate the strategy, especially if she has low-risk disease and responded well to her bortezomib therapy.
In the above-mentioned study, the rates of secondary cancers for those who received lenalidomide with their melphalan (groups 2 and 3), the risk of a secondary cancer was 7%. For those on melphalan and prednisone without lenalidomide, it was 3%. There is speculation that the interaction between melphalan and lenalidomide may be important for the increased risk of secondary cancers (the only 3 studies to show an increased risk of secondary cancers with lenalidomide were those in which low- or high-dose melphalan therapy were also given).
In your mother's case, she did not receive initial melphalan, so I suspect the risk for secondary cancers is not as high.
Good luck!
Pete V.
Revlimid (lenalidomide) maintenance therapy is being used increasingly after high-dose melphalan and stem cell rescue (autologous stem cell transplant) and after initial induction therapy for those who are not eligible or choose not to pursue the high-dose therapy option.
There was a recently published study in the New England Journal of Medicine in which newly-diagnosed, non-transplant myeloma patients were randomly assigned to receive one of 3 treatment strategies: 1) low-dose melphalan, prednisone; 2) low-dose melphalan, prednisone and lenalidomide; or 3) low-dose melphalan, prednisone and lenalidomide followed by lenalidomide maintenance. For the third group of patients, the lenalidomide maintenance was 3 weeks on, 1 week off. In that study, the patients who received lenalidomide maintenance stayed in remission longer. However, an overall survival advantage has not been seen between any of the groups as of yet, likely due to the fact that those assigned to the first 2 groups could go on to receive lenalidomide-based therapy at the time of relpase and respond to it in many instances.
In contrast, in the US study of lenalidomide maintenance after high-dose melphalan and stem cell rescue, there was an overall survival advantage to the use of maintenance. Given the significant impact on the duration of remission, many physicians have started using lenalidomide maintenace after initial induction therapy for non-transplant patients, regardless of what type of induction therapy was initially given (melphalan/prednisone +/- lenalidomide, lenalidomide/dex, bortezomib/dex, lenalidomide/bortezomib/dex, cyclophosphamide/bortezomib/dex, etc).
As such, your mother's treatment is appropriate. However, if your mother continues to struggle with the lenalidomide, you may need to re-evaluate the strategy, especially if she has low-risk disease and responded well to her bortezomib therapy.
In the above-mentioned study, the rates of secondary cancers for those who received lenalidomide with their melphalan (groups 2 and 3), the risk of a secondary cancer was 7%. For those on melphalan and prednisone without lenalidomide, it was 3%. There is speculation that the interaction between melphalan and lenalidomide may be important for the increased risk of secondary cancers (the only 3 studies to show an increased risk of secondary cancers with lenalidomide were those in which low- or high-dose melphalan therapy were also given).
In your mother's case, she did not receive initial melphalan, so I suspect the risk for secondary cancers is not as high.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Revlimid as initial maintenance therapy
Thank you so much Dr. Peter for your reply. I really appreciate you taking time out and answering my question.
Will taking Revlimid as maintenance might result in patient getting resistant to it? In that case wont it be beneficial to start the treatment only when it is needed else keep on monitoring it.
How does one know if a patient has MGUS and not active myeloma. My mothers doctor doesn't mention what kind of myeloma she has, so are there any specific tests that would confirm the type of myeloma.
My mother was detected with plasmacytoma last August, and then she had high number of kappa chains in blood and so an abnormal ratio. She also had high b2 microglobulin value. My only concern is if she has MGUS and she is given Revlimid will she not get resistant to it.
Will taking Revlimid as maintenance might result in patient getting resistant to it? In that case wont it be beneficial to start the treatment only when it is needed else keep on monitoring it.
How does one know if a patient has MGUS and not active myeloma. My mothers doctor doesn't mention what kind of myeloma she has, so are there any specific tests that would confirm the type of myeloma.
My mother was detected with plasmacytoma last August, and then she had high number of kappa chains in blood and so an abnormal ratio. She also had high b2 microglobulin value. My only concern is if she has MGUS and she is given Revlimid will she not get resistant to it.
Re: Revlimid as initial maintenance therapy
Hello Ruchi,
This posting by another one of the Beacon's Medical Advisors, Dr. Shain, discusses the criteria for differentiating between MGUS, smoldering myeloma, and active (symptomatic) myeloma.
https://myelomabeacon.org/forum/1st-week-of-diagnosis-find-out-only-after-seeing-on-bill-t1067.html#p5264
Best of luck!
This posting by another one of the Beacon's Medical Advisors, Dr. Shain, discusses the criteria for differentiating between MGUS, smoldering myeloma, and active (symptomatic) myeloma.
https://myelomabeacon.org/forum/1st-week-of-diagnosis-find-out-only-after-seeing-on-bill-t1067.html#p5264
Best of luck!
Re: Revlimid as initial maintenance therapy I just starded
My name is Zygfryd. I just started Revlimid REMS. I use 5 capsules and my scalp itching very badly. Does every body have same reaction? I am using Revlimid REMS for myelodysplastic syndrome - refractory anemia with ringed sideroblast (MDS-RARS).
If someone has some information lets me know. I do not know if I am going lose my hair or so?
Sincerely ,
Zygfryd
If someone has some information lets me know. I do not know if I am going lose my hair or so?
Sincerely ,
Zygfryd
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Zygfryd
Re: Revlimid as initial maintenance therapy
Sorry to hear about the itching you're experiencing, Zygfryd.
It is not uncommon for people taking Revlimid to experience itching or a rash. You'll see the issue mentioned in these forum discussions and also in these other discussions.
If the itching gets really bad, please consult with your oncologist, and it could develop into a serious condition (this is mentioned in this recent discussion).
It is not uncommon for people taking Revlimid to experience itching or a rash. You'll see the issue mentioned in these forum discussions and also in these other discussions.
If the itching gets really bad, please consult with your oncologist, and it could develop into a serious condition (this is mentioned in this recent discussion).
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