I have been 4 years on Revlimid, first with dexamethasone (which I couldn’t tolerate) then with prednisolone on reducing doses. Now it appears that my disease, albeit slowly, is becoming active again and I’ve been told that I must start thinking of alternative drugs. Velcade has been mentioned but I’m very worried about limitations on life style as we have a home abroad and also dispersed children and grandchildren so I really want freedom to carry on as normal a life as possible which involves travelling. This obviously doesn’t fit in with Velcade routines. My consultant says SCT probably isn’t an option as I’ve been so long on Revlimid. Don’t know anyway what could be used as maintenance drug. Would appreciate any feedback
Thanks, Linda.
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Re: What should be my next treatment?
Hello,
You have raised important questions and concerns. I would say that so far you have done well having been stable for 4 years with a single treatment regimen. If you are on standard doses of Revlimid and steroids and your disease is relapsing then it is time to switch to another treatment. If however, the doses of either the Revlimid or steroids have been reduced to a point where the efficacy is compromised one might consider returning to standard dosing (as tolerated). As you alluded to, the Revlimid/steroid combination is very attractive because of the minimal impact on quality of life. Therefore returning to standard dosing may be reasonable even if harder to tolerate so that you can take advantage of the simplicity of this regimen. Standard dosing of Revlimid is 25 mg on days 1–21 plus dexamethasone (or an equivalent steroid) 40 mg on days 1, 8, 15, and 22 of a 28-day cycle.
The steroid is an important aspect of most treatment regimens for myeloma although it is certainly true that steroids can be difficult(and sometimes impossible) to tolerate. If prednisolone (prednisone) is substitued for 40 milligramns of dexamethasone the equivalent dose of prednisolone would be roughly 200 milligrams weekly.
If you do have to use a different treatment approach Velcade is an excellent choice. When Velcade was intitally approved the drug was given twice weekly. But, in 2011 Velcade is routinely given once weekly (less impact on your lifestyle and fewer side effects). Most hematologists and oncologists would include Velcade as part of second line treatment for myeloma.
It is true that Revlimid can impact stem cell collection for transplant. However, this can be overcome with the use of chemotherapy for the collection (e.g. cyclophosphamide) or a new drug that dramatically improves stem cell collection for many patients called Mozobil. Most transplant physicians will stop Revlimid for 1-3 months prior to stem cell collection to improve the yield. Therefore, it may be possible for you to have a stem cell transplant. You might consider visiting a transplant center to learn more about your options.
You have raised important questions and concerns. I would say that so far you have done well having been stable for 4 years with a single treatment regimen. If you are on standard doses of Revlimid and steroids and your disease is relapsing then it is time to switch to another treatment. If however, the doses of either the Revlimid or steroids have been reduced to a point where the efficacy is compromised one might consider returning to standard dosing (as tolerated). As you alluded to, the Revlimid/steroid combination is very attractive because of the minimal impact on quality of life. Therefore returning to standard dosing may be reasonable even if harder to tolerate so that you can take advantage of the simplicity of this regimen. Standard dosing of Revlimid is 25 mg on days 1–21 plus dexamethasone (or an equivalent steroid) 40 mg on days 1, 8, 15, and 22 of a 28-day cycle.
The steroid is an important aspect of most treatment regimens for myeloma although it is certainly true that steroids can be difficult(and sometimes impossible) to tolerate. If prednisolone (prednisone) is substitued for 40 milligramns of dexamethasone the equivalent dose of prednisolone would be roughly 200 milligrams weekly.
If you do have to use a different treatment approach Velcade is an excellent choice. When Velcade was intitally approved the drug was given twice weekly. But, in 2011 Velcade is routinely given once weekly (less impact on your lifestyle and fewer side effects). Most hematologists and oncologists would include Velcade as part of second line treatment for myeloma.
It is true that Revlimid can impact stem cell collection for transplant. However, this can be overcome with the use of chemotherapy for the collection (e.g. cyclophosphamide) or a new drug that dramatically improves stem cell collection for many patients called Mozobil. Most transplant physicians will stop Revlimid for 1-3 months prior to stem cell collection to improve the yield. Therefore, it may be possible for you to have a stem cell transplant. You might consider visiting a transplant center to learn more about your options.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: What should be my next treatment?
Thank you Dr Libby for your reply. I really appreciate your comments which I will discuss with my oncologist here in UK
I was particularly interested in your use of steroids. I have always been told to take them on days 1-4 but perhaps your use of them once a week may decrease side effects.
I don't think I made myself clear but my stem cells were harvested some 4 years ago but to date I haven't pursued SCT due to an intense fear and concern as the success of such an invasive treatment. I think my oncologist feels that the success has been compromised by the fact that I have been taking Revlimid for some time. I could be interested in hearing if this is also the attitude in USA and would be most grateful if you could give me some statistics as to diease free time after transplant
Thanks again for your speedy and most useful reply-Linda
I was particularly interested in your use of steroids. I have always been told to take them on days 1-4 but perhaps your use of them once a week may decrease side effects.
I don't think I made myself clear but my stem cells were harvested some 4 years ago but to date I haven't pursued SCT due to an intense fear and concern as the success of such an invasive treatment. I think my oncologist feels that the success has been compromised by the fact that I have been taking Revlimid for some time. I could be interested in hearing if this is also the attitude in USA and would be most grateful if you could give me some statistics as to diease free time after transplant
Thanks again for your speedy and most useful reply-Linda
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lindaG
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