I am in a good remission, 6 years ago I had RVD, no bone marrow transplant and have been on Rev 10 mg for maintenance. I had a Bone Marrow Biopsy 16 months ago which showed 116 MM Cells per Million. Not MRD but pretty close. My month labs come back as negative in blood work but Dr. Is suggesting we complete another BMB to see if we can get an MRD result which could start the clock on the end of Rev maintenance. Not sure I'm in the mood for another BMB at the moment, for those of you that are in CR but not MRD neg what is your frequency of BMB . I know everyone is different and every DR has a varied approach but just looking for some feed back on what other people are being asked to do as far as Frequency of Biopsy. Thank you and wishing you all wellness and healing.

Has anyone out there been changed to Pomalidamide from Pomalyst? I have been on Pomalyst for 9 years and doing great and I hate to change now.Has anyone been on Pomalidamide for awhile and still having the same results. I know they say they are the same drug but sometime not quite . Any insight would be greatly appreciated. Thank you JC

Since I had a clean PET scan and I am MRD negative through my bone biopsy and blood work. does the 17 P deletion still apply to me?

Breckenridge pharmacy has a copay card for those who qualify for help covering the cost of Pomalidomide. Please go to this link for information and for application. https://pomalidomidecapsules.copaysavingsprogram.com/#:~:text=Under%20the%20program%2C%20qualifying%20patients%20may%20pay,Program%20assistance%20per%20prescription%20and%20annual%20benefits

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Bactrim is given as a prophylactic antibiotic to prevent serious lung infections. Please share your experience with this drug, concerning its side effects and the fact that it can do much damage to the gut biome. I understand there are alternative antibiotics offered in difficult cases, and I'd appreciate it if anyone can share their experiences if they've tried those alternatives. I've been taking Acyclovir, an antiviral is also given as a prophylactic, for years without problems. But I'm concerned about the side effects of Bactrim. How have patients here been able to maintain their Bactrim therapy? I've read that alternatives to Bactrim could be Pentamidine, Atovaquone or Dapsone. Pentamidine is given by nasal spray and both it and Atovaquone do not appear to be too damaging to the gut biome. Has anyone here tried these alternatives? Any comments would be appreciated.

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