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slhenk9
Multiple Myeloma Discussion • August 6
pain management when on a trial study drug
any suggestions for pain management, my husband is on morphine right now but that doesn't always help completely...looking for suggestions
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dshaffer11
Multiple Myeloma Discussion • August 5
Dr. James Berenson not effective for me
When I was first diagnosed with MM, I met with an Oncologist at my local cancer center and then through another article about best multiple myeloma doctors came across Dr. James Berenson in LA. I was able to get an appointment fairly quickly which maybe should have been a red flag. Anyway, I met with Dr. Berenson and decided to follow his protocol for treatment. The local oncologist when seeing the plan commented that he was recommending using a chemo agent doxorubicin that had been around a long time. I was also to get 40 mg of Dex twice a week and Velcade. The long and short of it is that it was not an effective treatment for me and once we backed off on the Dex due to the side effects, my myeloma numbers starting going the in the wrong direction telling me that the other medications weren’t doing much if anything. For me Dr. Berenson’s protocol was not effective and set my recovery back. In hindsight I wish I had listened to the other oncologist who was recommending a current standard of care protocol.
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Suemcenteegmailcom
Multiple Myeloma Discussion • August 4
Immunotherapy induced colitis
It appears I have gotten colitis from a bispecific. Anyone else experience this? If so how was it treated?
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KarThom
Multiple Myeloma Discussion • August 3
CAR-T Cell Therapy
My husband has had Multiple Myeloma since 2008. We are scheduled to go to the University of Arkansas Multiple Myeloma Center to have his T cells extracted this week. He will have the Car-T Cell Therapy with Carvykti in September. What advice would you give to him or myself, as his caretaker during the upcoming procedures? Thanks!
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Sharlyn
Multiple Myeloma Discussion • August 2
Steroid cataracts
Any program available to assist with out of pocket costs for cataract extraction and lenses. Cataract that are the side effect of steroid use.
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jleid
Multiple Myeloma Discussion • August 1
Talquetamab stopping treatment
I have been MRD negative for almost 5 years on a clinical trial which has ended. I am told that I can stop treatment completely, or continue on my regimen of one injection every 2 months without side effects. If I stopped and then relapsed , most likely I would go back for Talquetamab but would need the step up process which might include a hospital stay, and to expect the usual side effects like loss of nails, loss of taste, etc . It is is a difficult choice. What do others think?
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Love
Multiple Myeloma Discussion • July 31
ASCT
What length of time are you seeing of relief from MM after ASCT? I just saw my Oncologist holding form 8/2018 and two years off any therapy.
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Dallas#1
Multiple Myeloma Discussion • July 30
Any experiences with trying medical marijuanna???
When anxiety meds just don’t last or help anxiety Does anyone have experiences w adding non smoking medical marijuanna along w anxiety meds and what form ?? Gummies, oil or pill form?? Have MM, CMML along with COPD And Meds are just not lasting long enough Any experiences will be greatly appreciated Thank u
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MaroonAlbatross
Multiple Myeloma Discussion • July 29
Treatment without Dex?
I have been in treatment for a long time and am currently on the KPD regimen for IGG Lambda MM. I can't take the Dex anymore - I mean the side effects. There seems to be a growing body of evidence that removing the Dex from treatment may not adversely affect PRS or OS and I would love to know if anyone else has gone Dex Free? If so, how is going? Thank you So much!
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Donna
Multiple Myeloma Discussion • July 26
Post car t
Not a question I just wanted to share I had my post car t pet scan, bmb, and bloodwork on the 14 and 15. Saw dr on the 23. I am in complete stringent remission
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may33jen
Multiple Myeloma Discussion • July 26
Talquetamab
I will start Talquetamab therapy as my bridging therapy before my car-t therapy. I would like to hear from anyone who has gone through this therapy for their experiences and tips for minimize the side effects.