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AP
Multiple Myeloma Discussion • March 13, 2025
Bay Area Physical Therapist Recommendations?
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I have been suffering from knee pain since about 3 years. Initially there was lot of swelling in the knee and the doctor removed some fluid to loosen the knee. I have been doing yoga and biking to strengthen the thighs and calf muscles ever since, have been successful to avoid any major recurrence of swelling and its now reduced by about 90%. My doctor recommended to have a physical therapy to work on the remaining issue. Any recommendations for a good physical therapist in the San Francisco bay area? I live in the city of Fremont in the east bay. Thanks in advance 🙏
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domijo
Multiple Myeloma Discussion • March 13, 2025
MRD Negative Possible with Positive Biopsy?
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Good evening! I recently completed four cycles of DVRd after being diagnosed with MM presenting with slight anemia, but no other CRAB criteria. I have achieved MRD negativity in my blood, and other numbers such at B2M, MSpike, FLC, etc. seem to be returning to normal. I’m awaiting the results of the ClonoSeq on my bone marrow. However, my BM biopsy results still report plasma cell neoplasm. Is it possible for the ClonoSeq to return MRD negativity with the bone marrow biopsy exam still showing this? I’m wondering if those MM cells are still in the process of dying off. Thank you!
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DIahanna • Admin
Multiple Myeloma Discussion • March 13, 2025
Grant Available for Cancer Home Care
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Healthwell Foundation (healthwellfoundation.org) has a $2000 grant available for Cancer Home Care if you need assistance at home. You must be 500% of Federal poverty level income to qualify.
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DIahanna • Admin
Multiple Myeloma Discussion • March 13, 2025
Helpful Tips for Finding Financial Support
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People forget to call 211 to find local resources that may be available. Also don't forget financial resources that are available from some church organizations. Denomination ie not taken into consideration. Catholic Charities is one. Contact the local office near you. LLS has their Urgent financial assistance open as well.
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jadeHedgehog
Multiple Myeloma Discussion • March 12, 2025
Low Immunoglobulins and IVIG: Your Experience?
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I was diagnosed in 2021, had five months of induction then ASCT in November 2021. Since the ASCT, I have been on maintenance of Velcade for about 4 months, then transitioned to Ninlaro. My immunoglobulin levels have never in all that time gotten back up to a normal range. My oncologist has discouraged me from getting IVIG because I haven't had any infections but part of the reason I haven't had infections is I always wear a mask when around other people and don't go out much. Anyone else have experience with IVIG and under what circumstances did you get it?
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janelsmit
Multiple Myeloma Discussion • March 12, 2025
Managing 'Watch and Wait' for Rising Light Chains?
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My monthly bloodwork continues to show my light chain increasing. When I ask my Oncologist should we do something her response is we just watch it! That’s driving me nuts! I had a Stem Cell Transplant in May 2022 and have been on maintenance Lenalidomide 2.5. Has this happened to you and how long did you sit back and watch?
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curiosity2025
Multiple Myeloma Discussion • March 12, 2025
Experiencing Vertigo & Nausea With Smoldering?
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Hi! I'm was diagnose with smoldering Myeloma on November 2024. I have pains in my back and legs. I'm also experiencing vertigo, I have lost balance and feel nauseous must of the time. I feel like I am walking in a tunnel. When this symptoms are really bad I feel confused. I would like to kow if other people have the same experience. Also, since I have been recently diagnose with smoldering Myeloma in the low to medium risk group, have many of you with the same diagnose, been with out treatment ando for haw many years.
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salmonWhale
Multiple Myeloma Discussion • March 12, 2025
Venetoclex or Darselex Causing Taste Loss?
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I'm currently on a 2.5 year drug holiday, and I'm trying to plan ahead for the event of my relapse and I'm considering Venetoclex as a possible drug, possibly in combination with Kyprolis. I took Venetoclex for a short time along with Darselex Faspro and I lost my sense of taste. That was 4.4 years ago, and I don't know which drug was the culprit. But finally, my taste is showing signs of recovery. My question is whether anyone here has concluded that either Darselex or Venetoclex, or in combination, has caused taste problems as a side effect? Many thanks, and I wish everyone battling this disease the best of luck.
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Janisvt
Multiple Myeloma Discussion • March 11, 2025
Persistent Diarrhea After Stopping Revlimid?
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Good Morning! I have a question relating to diarrhea caused by Revlimid (Lenalidomide). After taking Revlimid as maintenance for 5 years I ceased taking it 6 months ago. I still have ongoing issues with diarrhea and still taking Cholestyramine for Bile Acid Malabsorption -with good effect. Has anyone else had issues with ongoing diarrhea after ceasing Revlimid? I am not taking any other drugs atm.
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judyr729
Multiple Myeloma Discussion • March 11, 2025
MMR Vaccines After SCT: How Many Doses?
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My question is how many MMR vaccines you received after a stem cell transplant (usually 24 months after). Some centers give one and others give two. Just wondering, thank you!
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MariaJ • Admin
Multiple Myeloma Discussion • March 11, 2025
Share Your Talquetamab Experience for Research
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HealthTree, in partnership with CorEvitas, is conducting a study for patients who started Talquetamab (TALVEY) therapy less than 4 months ago. 🔒 The information you share will be confidential and de-identified. Your insights can help shape the future of myeloma research and improve care for others. 💙 👉 Ready to join? Click here to read and sign the consent form: https://bit.ly/3DoCJom ✅ Our team will contact you to confirm your eligibility and arrange the interviews. 🙌 Thank you for helping advance myeloma research! #MyelomaResearch #Talquetamab #HealthTree