I know a lot of patients have experience with dexamethasone in treatment regimens, but does anyone have any experience taking it in maintenance along with Revlimid? If so, what dose and schedule did you use and how did it go?
I had a standard induction (RVD) +SCT last summer (July) and am currently sCR MRD negative. I have been taking 10mg lenalidomide [Revlimid] (21 on/7off) for the past 5 months, but am going to have to drop to 5mg because of neutropenia. My counts had not really fully recovered from the transplant and have been slowly trending down since I've been on maintenance.
I want this CR to last as long as possible so I am keen to stay on effective maintenance. Lenalidomide works better with a steroid, so I think adding a low dose of dex would be a good idea and might even help with the myelosuppression [lowering of white blood cell counts].
Am going to talk to my oncologist about adding dex again this week. In the past my doctor did not support the idea because of the long term side effects of steroids. I'm thinking the long term effect of myeloma (!) is worse, and am willing to risk the side effects. I'm young, otherwise healthy, physically active and didn't really mind the dex during my induction regimen. I was able to keep working on 20mg dex two days a week.
Any advice?
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
Re: Adding dex to maintenance Revlimid?
Dear Tough Mom,
The existing data would support the use of lenalidomide (Revlimid) as a single agent when used in the maintenance setting after transplant. However, long-term use of combined lenalidomide and dexamethasone has also been studied in clinical trials. A recently reported study in transplant-ineligible patients compared 18 months of melphalan / prednisone / thalidomide to 18 months of lenalidomide and dexamethasone to indefinite treatment with lenalidomide and dexamethasone. Indefinite treatment with lenalidomide and dexamethasone produced more durable remissions compared to the other two approaches and improved overall survival compared with melphalan / prednisone/ thalidomide. Detailed information about the long-term side effects of combined therapy have not been presented at this time.
One option would be to continue doing what you are doing. There are many patients who have to decrease their lenalidomide dose to 5 mg because of low neutrophils. 5 mg is considered within the therapeutic range for lenalidomide maintenance dosing, albeit at the lower end.
Another question is how low have your neutrophils dropped? Mild to moderately low neutrophil counts are common and do not necessarily require dose reduction unless accompanied by increased rates of infection. If you are not experience problems with infection and your neutrophil count is not that low, you may be able to press on at 10 mg just as you are doing.
The last option is what you proposed. By doing this, you have to expect additional side effects, although you seemed to do quite well the first go around. The highs followed by the lows (people do not like the lows!), weight gain, fluid retention, insomnia, mood changes, etc. There are also more long-term issues with respect to increased immunosuppression, bone mineral density loss, wound healing. Dex does shake neutrophils off of the lining of the blood vessels into the circulation, thus artificially increasing the neutrophil count. It does not correct the myelosuppression.
I think this is something that you will need to discuss with your oncologist. The risk factors associated with your disease at initial diagnosis might help the decision making process as well.
Good luck and let us know what you and your doctor wind up doing!
Pete V.
The existing data would support the use of lenalidomide (Revlimid) as a single agent when used in the maintenance setting after transplant. However, long-term use of combined lenalidomide and dexamethasone has also been studied in clinical trials. A recently reported study in transplant-ineligible patients compared 18 months of melphalan / prednisone / thalidomide to 18 months of lenalidomide and dexamethasone to indefinite treatment with lenalidomide and dexamethasone. Indefinite treatment with lenalidomide and dexamethasone produced more durable remissions compared to the other two approaches and improved overall survival compared with melphalan / prednisone/ thalidomide. Detailed information about the long-term side effects of combined therapy have not been presented at this time.
One option would be to continue doing what you are doing. There are many patients who have to decrease their lenalidomide dose to 5 mg because of low neutrophils. 5 mg is considered within the therapeutic range for lenalidomide maintenance dosing, albeit at the lower end.
Another question is how low have your neutrophils dropped? Mild to moderately low neutrophil counts are common and do not necessarily require dose reduction unless accompanied by increased rates of infection. If you are not experience problems with infection and your neutrophil count is not that low, you may be able to press on at 10 mg just as you are doing.
The last option is what you proposed. By doing this, you have to expect additional side effects, although you seemed to do quite well the first go around. The highs followed by the lows (people do not like the lows!), weight gain, fluid retention, insomnia, mood changes, etc. There are also more long-term issues with respect to increased immunosuppression, bone mineral density loss, wound healing. Dex does shake neutrophils off of the lining of the blood vessels into the circulation, thus artificially increasing the neutrophil count. It does not correct the myelosuppression.
I think this is something that you will need to discuss with your oncologist. The risk factors associated with your disease at initial diagnosis might help the decision making process as well.
Good luck and let us know what you and your doctor wind up doing!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Adding dex to maintenance Revlimid?
Thank you very very much, Dr. Voorhees, for the detailed answer. It was really helpful to have your opinion before I went to talk to my oncologist.
My doctor did convince me to stick with the 5mg lenalidomide maintenance without steroids for a month or two and hopes my counts rise enough to escalate back up to 10mg. He argued that 5mg is an effective dose, especially for people with smaller or normal builds, and that it is not really consistent with "maintenance" to include steroids, which have so many long term side effects. I quoted the FIRST study that you mentioned, but that was a treatment study in transplant-ineligible elderly patients, he thought not applicable to a 47yo on maintenaince
Regarding risk, I was ISS Stage 1 at diagnosis. I can't quite figure out if I have standard or low risk disease (normal cytogenetics, FISH positive for loss of 1P/1Q, IGH, FGFR3, C-MAF, and 13Q), but it is not high risk, from what I have read. Normal renal function and no bone involvement either, so I'm lucky in some ways.
My WBC dropped to 1.8 and my neutrophils to 0.9. I don't think that is all that low and I never get infections, so I'm hoping they will rise pretty quickly and I can talk my doc into the higher dose again. If anyone has ideas about getting counts up, I'll try them. I'm focusing on healthy protein, vegetables, and moderate exercise, but if there is anything that people know of to get the bone marrow pumping neutrophils, let me know!
My doctor did convince me to stick with the 5mg lenalidomide maintenance without steroids for a month or two and hopes my counts rise enough to escalate back up to 10mg. He argued that 5mg is an effective dose, especially for people with smaller or normal builds, and that it is not really consistent with "maintenance" to include steroids, which have so many long term side effects. I quoted the FIRST study that you mentioned, but that was a treatment study in transplant-ineligible elderly patients, he thought not applicable to a 47yo on maintenaince
Regarding risk, I was ISS Stage 1 at diagnosis. I can't quite figure out if I have standard or low risk disease (normal cytogenetics, FISH positive for loss of 1P/1Q, IGH, FGFR3, C-MAF, and 13Q), but it is not high risk, from what I have read. Normal renal function and no bone involvement either, so I'm lucky in some ways.
My WBC dropped to 1.8 and my neutrophils to 0.9. I don't think that is all that low and I never get infections, so I'm hoping they will rise pretty quickly and I can talk my doc into the higher dose again. If anyone has ideas about getting counts up, I'll try them. I'm focusing on healthy protein, vegetables, and moderate exercise, but if there is anything that people know of to get the bone marrow pumping neutrophils, let me know!
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
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