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DIahanna • Admin
Multiple Myeloma Discussion • March 17
Join our Financial Connect Group
PLease join our Financial Connect group. Here you will find very important relevant information that you may find very useful in your cancer journey.
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Iliana • Admin
Multiple Myeloma Discussion • March 16
A Patient's Story: Taking Control of My Data
"It took me probably the better part of a day the first time to figure out what kind of myeloma I had." Dave Braucht’s story is a familiar one. Between different labs and multiple specialists, his medical history was scattered everywhere. By getting his genetics and lab work organized into one visual interface, he cut hours of confusion down to minutes of clarity. Dave is sharing his experience this Myeloma Awareness Month to help others feel more in control of their own data. Watch full video here: https://htree.org/myelomaawarenessmonth2026
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Suzukiviolin25
Multiple Myeloma Discussion • March 16
ASCT vs. deferring for later
So I'm reaching out to anyone on here who has done quadruplet therapy (either dara VRD or dara KRD) and has translocation 11;14. Just wondering how you have responded to your therapy and whether you have decided to proceed to ASCT or defer that to a later time. I have one more treatment left in cycle 5. As of end of cycle 4 my M spike had decreased from 3.05 to 1.18, my kappa has gone from 103 to 21, and my IGg down from 4500 to 1780. i don't think my m spike will go to 0 by the end of cycle 6 but I'd still rather try to extend therapy at least for two more cycles to see how low I can get those levels. Just searching for those of you who may be or have been in the same situation. FYI-I am being treated at MSK.
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Rauchka60DAF
Myelodysplastic Syndromes Discussion • March 16
MDS and CMML
I had another bone marrow Biopsy and the result came back MDS Low risk and very likely CMML Cronic myelomonosystic leukemia.- high risk. My oncologist took me off Vidaza and said there was nothing else they could do for me other than blood transfusion…. Dacogen could possibly give me about a 25% chance. Or clinical trials…. It I am looking more towards quality of life as I am 85 and more than likely will not have much time on 5his earth anyway.. I have several mutations JAK2 TET2, , etc,,etc. also have many antigens and antibodies when i need blood transfusions. What would you do ?
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Rauchka60DAF
Myelodysplastic Syndromes Discussion • March 16
Palliative care
When did you start looking for palliative care,….. how ill were you, what did they do for you to make you more comfortable. Was it helpful……
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Ann
Multiple Myeloma Discussion • March 15
Myeloma specialist
A friend of mine on east coast was recently diagnosed with myeloma and would like to see a myeloma specialist at Dana-Farber or Memorial Sloan Kettering. I told him that I would ask if you have any recommendations for myeloma specialists at either of these organizations. I’d appreciate any names that I can pass along. Thanks!
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Mazm23
Multiple Myeloma Discussion • March 15
Menstrual cycle returned
Hi all, so i had a sct in December 2024, It didnt work unfortunately so I started treatment again the folling June 2024 and have been doing well on weekly treatment since with my number all in range, last week my period came back after 15 months and I was full sure I had gone or was in the pre menopause I had all the symptoms hot flushes, bad night sweats, and now they are all gone, has this hap o ended to anyone else? Im waiting on a referral from a gynaecologist, im just curious for anyone else, im now 38
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Annborell
Multiple Myeloma Discussion • March 14
Clinical trial
Preparing to start on a clinical trial at U of Penn. It is a new trial with Bispecific antibody Elranatamab (Elrexfio) and investigational drug Inobrodib (CCS1477). Is there anyone out there that is in this trial or anyone on one of these drugs and if so how is it going (response/side effect profile). The Bispecific is commercially available.
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Iliana • Admin
Multiple Myeloma Discussion • March 13
Join the 2026 MRD Experts Meeting
Join the conversation about MRD in multiple myeloma. 🩸 The 13th Annual Miami Myeloma MRD Meeting 2026 will bring together leading experts to share the latest research and insights on Minimal Residual Disease and its role in advancing myeloma care. If you're interested in MRD or following the latest updates in myeloma research, this is a great opportunity to learn and discuss with others in the community. 🗓️ April 10, 2026 ⏰ 7:30 AM – 5:30 PM ET 📍 Miami, FL | Virtual access available https://healthtree.org/myeloma/community/events/apr26-miami-myeloma-mrd-2026?utm_source=&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general