Greetings from Cairo, Egypt, where I live permanently. I'm new to this forum. Was diagnosed 1995, in time to benefit greatly from Aredia, but otherwise I've used only old-fashioned meds from choice. SCT not an option. Did wonderfully on cyclophosphamide / pred till last year when bladder became damaged (could have taken Mesna to prevent this but my onc was not aware). Quality of life still good, so really don't want to get PN at this stage which is what seems to happen to so many people taking thalidomide, Rev, and Vel. (I had a brief experience of thalidomide and got severely constipated on only 50 mg alternate days.)
Is anyone using melphalan/pred as maintenance (not in prep for an SCT)? What dose and frequency?
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lesley tweddle - Name: lesley tweddle
- Who do you know with myeloma?: one other person
- When were you/they diagnosed?: October 1995
- Age at diagnosis: 51
Re: maintenance with melphalan/pred - anyone still doing tha
Hello from Seattle,
Melphalan is still a good drug for myeloma, especially when it is combined with other drugs like thalidomide, Revlimid or Velcade. In general Melphalan is not used as a maintenance drug. Revlimid has very little to no neuropathy.
You have done remarkably well having survived myeloma for 17 years !!!
An excellent and fairly well tolerated combination for myeloma is the MPT regimen (melphalan + prednisone + thalidomide).
I think if I were in your shoes I might try to get on the Revlimid + dexamethasone regimen which isvery simple and very well tolerated. It is pills only which is quite convenient. All of this advice depends on your access to medical care in Egypt as the new drugs are all very expensive.
Best of luck with all of this!
Melphalan is still a good drug for myeloma, especially when it is combined with other drugs like thalidomide, Revlimid or Velcade. In general Melphalan is not used as a maintenance drug. Revlimid has very little to no neuropathy.
You have done remarkably well having survived myeloma for 17 years !!!
An excellent and fairly well tolerated combination for myeloma is the MPT regimen (melphalan + prednisone + thalidomide).
I think if I were in your shoes I might try to get on the Revlimid + dexamethasone regimen which isvery simple and very well tolerated. It is pills only which is quite convenient. All of this advice depends on your access to medical care in Egypt as the new drugs are all very expensive.
Best of luck with all of this!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: maintenance with melphalan/pred - anyone still doing tha
Dear Dr Libby,
Thank you so very much for your reply--I really do appreciate it.
Lesley
Thank you so very much for your reply--I really do appreciate it.
Lesley
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lesley tweddle - Name: lesley tweddle
- Who do you know with myeloma?: one other person
- When were you/they diagnosed?: October 1995
- Age at diagnosis: 51
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