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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
Miami Myeloma MRD Meeting 2026 - HealthTree for Multiple Myeloma

Miami Myeloma MRD Meeting 2026 - HealthTree for Multiple Myeloma

MRD Meeting hosted by the Myeloma Institute at Sylvester Comprehensive Cancer Center in collaboration with the MMRF, IMF, and HealthTree Foundation

https://healthtree.org/myeloma/community/events/apr26-miami-myeloma-mrd-2026?utm_source=&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
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Michael
Chronic Lymphocytic Leukemia Discussion • March 13
VACCINES AND CLL
Peace all ✌️ I was just diagnosed with Lukemia CLL. Apparently I’ve had high white blood cell counts for the last 13 years but just found out about it recently. My Cancer Doctor wants me to receive a host of inoculations because of my low immunity to fighting off potential illnesses. The shots she listed were For Corona Virus. Shingles. Cocil pneumonia, flu etc. I have had the Moderna vaccine in the past. I’m just so Leary now about all of these stories about illnesses and weird happenings with these vaccines lately. Wondering if I would be better off without them. Anybody care to weigh in ???
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AP
Multiple Myeloma Discussion • March 12
Autophagy
Recently, one of my friends explained me the concept of autophagy and its affect on auto immune diseases. Did a 3 days of water fasting snd felt very good. I am planning to do it every month going forward. Does any one here do practice this? Any experience good or bad is appreciated.
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dshaffer11
Multiple Myeloma Discussion • March 12
Cost of Revlimid
Not sure if this really belongs here, but as of Jan 1, 2026 quantity restrictions were supposedly removed from the generic manufacturers of lenalidomide. I have medicare part D and the price that Onco360 billed medicare was exactly the same in December and January at $9973.76 for 15 mg strength and 14 day supply. I called some other pharmacies and AcariaHealth said the cost was $13,128 for 15 mg for 14 days. AllianceRx said their price w/o insurance was $11,774.30. They mentioned Health Well Grand assistance and co pay assistance. I can't promise that the price info from AcariaHealth is accurate as they may have not understood about the strength and no of days. If you haven't see it this article is worth reading. https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma If you are so inclined feel free to share what you are paying for lenilidomide in case we can steer our prescribing oncologists to use the lowest cost pharmacies.
The Price of Remission: This Cancer Drug Saves Lives — but Costs a Fortune. I Wanted to Know Why.

The Price of Remission: This Cancer Drug Saves Lives — but Costs a Fortune. I Wanted to Know Why.

When I was diagnosed with cancer, I set out to understand why a single pill of Revlimid cost the same as a new iPhone. I’ve covered high drug prices as a reporter for years. What I discovered shocked even me.

https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma
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ivoryDog
Multiple Myeloma Discussion • March 12
Clinical Trial
Looking for information on Arlocabtagene Autoleucel BMS-986393) a GPRCD- directed Cart - T Cell Therapy.
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XimenaG • Admin
Chronic Lymphocytic Leukemia Discussion • March 12
Managing Nutrition During Treatment
🥗 Nutrition During Blood Cancer Treatment: Eating Well Through Treatment and Recovery Eating well during blood cancer treatment can be challenging. Changes in appetite, taste, and side effects can make daily meals difficult, but the right nutrition strategies can help support your strength and recovery. Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, for a practical webinar designed for patients and caregivers. You’ll learn: • How to build a flexible and sustainable eating pattern during treatment • Tips to manage appetite loss and taste changes • Food safety essentials for patients with weakened immune systems • Nutrition strategies to support recovery and long-term health 📅 March 19, 2026 ⏰ 2:30 – 3:30 PM EDT 💡 Can’t attend live? Register anyway, and we’ll send you the recording. Register here: https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, to talk about nutrition for blood cancer patients focused on practical strategies.

https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
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XimenaG • Admin
Myelofibrosis Discussion • March 12
Webinar: Nutrition Tips for Treatment & Recovery
🥗 Nutrition During Blood Cancer Treatment: Eating Well Through Treatment and Recovery Eating well during blood cancer treatment can be challenging. Changes in appetite, taste, and side effects can make daily meals difficult, but the right nutrition strategies can help support your strength and recovery. Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, for a practical webinar designed for patients and caregivers. You’ll learn: • How to build a flexible and sustainable eating pattern during treatment • Tips to manage appetite loss and taste changes • Food safety essentials for patients with weakened immune systems • Nutrition strategies to support recovery and long-term health 📅 March 19, 2026 ⏰ 2:30 – 3:30 PM EDT 💡 Can’t attend live? Register anyway, and we’ll send you the recording. Register here: https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, to talk about nutrition for blood cancer patients focused on practical strategies.

https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
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XimenaG • Admin
Acute Lymphocytic Leukemia Discussion • March 12
Nutrition During Blood Cancer
🥗 Nutrition During Blood Cancer Treatment: Eating Well Through Treatment and Recovery Eating well during blood cancer treatment can be challenging. Changes in appetite, taste, and side effects can make daily meals difficult, but the right nutrition strategies can help support your strength and recovery. Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, for a practical webinar designed for patients and caregivers. You’ll learn: • How to build a flexible and sustainable eating pattern during treatment • Tips to manage appetite loss and taste changes • Food safety essentials for patients with weakened immune systems • Nutrition strategies to support recovery and long-term health 📅 March 19, 2026 ⏰ 2:30 – 3:30 PM EDT 💡 Can’t attend live? Register anyway, and we’ll send you the recording. Register here: https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Nutrition During Blood Cancer Treatment - HealthTree for Blood Cancer

Join oncology dietitian Peter A. Adintori, MS, RD-AP, CSO, CDN, CNSC, to talk about nutrition for blood cancer patients focused on practical strategies.

https://healthtree.org/blood-cancer/community/events/mar26-nutrition-blood-cancer-treatment-recovery?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general