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peachCrocodile
Multiple Myeloma Discussion • February 5
Sharing My Diagnosis Story
Was diagnosed July 2021 didn’t do sct did the standard treatment Dara Velcade dex revlimid and zometa got very good results on maintenance with 5 milligrams Revlimid since January 2024. Developed prostate cancel had to do 5 days a week for 6 weeks radiation. That’s under control feeling good. Doc wants me to get a pet scan with contrast, very worried about all the radiation I’m getting. Since 2021 had 2 pet scans ct scans X-rays shoulder jaw elbows . Doc says it’s a small amount and dismisses my concerns. Does anyone have any advice for me?
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Iliana • Admin
Multiple Myeloma Discussion • February 5
Exploring a Clinical Trial for Relapsed Myeloma
If you or a loved one is living with relapsed or refractory multiple myeloma, exploring a clinical trial may be an option worth considering. A clinical study is now enrolling across the U.S. and is evaluating a potential treatment designed to help the immune system better recognize and target myeloma cells. For some patients, clinical trials can offer an important opportunity to learn about new treatment approaches. HealthTree is here to help you understand whether this study may be a good fit and to support you every step of the way. 🔎 Explore your options 🤝 Get personalized guidance 📍 Multiple study locations nationwide Want more information? Email us at support@healthtree.org https://clinicaltrials.gov/study/NCT06158841
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sapphireElephant
Multiple Myeloma Discussion • February 5
Etentamig Trial
Hello - wondering if anyone is part of the Etentamig trial and how it is going. My doctor is suggesting it for me. Where was your m- protein when you started? Thanks -
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stephb
Multiple Myeloma Discussion • February 4
Painful Plasmacytoma
Hello, I was diagnosed with an almost 9cm solitary plasmacytoma on my sacrum in Oct 2025. I had an M-spike upon diagnosis which they said was due to the tumor being secretory. Bone marrow biopsy was clear. I was given 25 rounds of radiation to cure it, but the tumor has not responded (shrunk) at all. M-spike has come down roughly 50%. I'm in terrible pain all the time from this tumor. Does anyone have experience with something like this? I keep asking about a surgical solution, but they are saying chemo would be the next step. I would like to avoid chemo since it is a localized problem. Any advice is welcome. Also has anyone had one surgically removed?
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DIahanna • Admin
Multiple Myeloma Discussion • February 2
Medicare Advantage Open Enrollment Period which began Jan 1st - March 31st.
Hello For all of you who are currently enrolled in a Medicare Advantage Plan, you can change plans during the Medicare Advantage Open Enrollment Period which began Jan 1st - March 31st. Please review your plans as there have been a lot of changes in what plans cover. You can also choose to go back to Original Medicare, which is Part A and B. If this is something you are considering, understand that of you don't have a supplemntal plan such as an Advantage Plan or a Medigap Plan, you will be responsible 20% of everything. There is no cap. Check to see if your state will allow you to change to a Medigap Plan even after your initial enrollment period is over. Please reach out to a financial coach to help you navigate these issues. We want you to be aware, knowledgeable about you options and covered for treatment.
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Luz42
Multiple Myeloma Discussion • February 1
Back Pain, and lack of exercise
Hello all, I've been SMM for more than 5 years. I am beginning to have reoccurring back pain. I have upcoming appointments for Bone marrow and MRI. That said, I recently threw my back out and can barely move, walk, lay, or sit (don't know how I'm going to do these tests). I walk slowly around my home and am losing all muscle in my legs, arms, abdomen. Any recommendations for any exercise that doesn't cause added pain?
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Natalya
Multiple Myeloma Discussion • January 31
Complementary Medicine for pain management and digestion
Hello, I am writing on behalf of my mom who just recieved her diagnosis in early January. Her Myeloma is very progressed, and she is entering into cancer treatment under weight and in a lot of pain. Would any of you be willing to share what your pain protocol is and how you have kept up your appetite?
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JFG1216
Multiple Myeloma Discussion • January 30
Failed biopsy -- what next?
Hello, I was newly diagnosed with lambda lightchain in June 2025. I had had the disease for some time apparently, was in kidney failure, and had many lesions and vertebral issues. I have responded very well to DRVd, with serum tests showing normal light chain numbers. At six months they did a biopsy but did not get enough material to get an accurate read on MRD. The doc's don't seem to want to do another biopsy because of the serum numbers. Does that make sense? They are continuing with quadruplet therapy for now, beginning cycle 7. They gave me a full two months with no treatment due to stem cell harvesting, shortly after the failed biopsy and other tests required for that. Thoughts??? I don't know why we wouldn't do another MRD biopsy.
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Couldbeworse
Multiple Myeloma Discussion • January 29
Beginning soon
Just looking to see how you handled the harvesting and the transplant. Anything you would do differently? Any suggestions ? I start harvesting next week followed by the transplant.
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parit09
Multiple Myeloma Discussion • January 28
carfilzomib
I’m wondering if anyone in this group has experience with carfilzomib, im currently using this med as part of a bridging treatment. Just wondering, Cheers
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ChioOsuna
Multiple Myeloma Discussion • January 28
EVENT ON FEBRUARY 03: Bi-Monthly Blood Cancer Financial Q&A!
Join us for our bi-monthly financial Q&A featuring, our amazing in-house financial expert, Diahanna Vallentine! This engaging session is your opportunity to get answers to your pressing questions about blood cancer treatment costs, insurance coverage, and financial resources available to you. Whether you have specific concerns or just want to learn more about managing your finances during treatment, Diahanna is here to provide valuable insights and guidance. Don't miss this chance to empower yourself with the information you need to navigate the financial aspects of your care! Register now: https://healthtree.org/blood-cancer/community/events/feb26-blood-cancer-financial-questions?utm_source=social_media&utm_medium=connect&utm_campaign=SMorganic&utm_content=general
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SpouseOfPatient
Multiple Myeloma Discussion • January 28
Introduction
Hi - 'finally reaching out on this message board as a 58-yr-old wife of 63-yr-old husband diagnosed with smoldering multiple myeloma in Aug. 2024. He has multiple comorbidities & insists on only very locals dr's. We've been testing & consulting with 2 different dr's with whom we've not been thrilled. New dr consults scheduled for Feb. following next wk scan we requested to clarify inconclusive findings on other recent scan types. 1 dr who is soon leaving has recommended darzlex faspro even before we requested scan. We're holding off until we have test results & subsequent consultations. I work full time, trying to hold off retirement until my target of reaching 60, but often feel I'm spread too thin to be the best me for this journey.
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arangold
Multiple Myeloma Discussion • January 28
Daratumumab Maintenance
Hi I am in New Zealand where Daratumumab is not funded. I have paid for my induction and for monthly maintenance for 4 months. However, this is now becoming very expensive at over $10,000 per month and I wondered if any research has been done on having Dara every two months instead of monthly and if this could be worth considering? I had reactions to both Lenalidomide and Bortezomib and the Dara has taken my paraproteins down to 4.
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apricotHare
Multiple Myeloma Discussion • January 28
Zometta
I was on Zometta monthly following my stem cell transplant in 2011. That lasted for about 5 years at which time I was told that Zometta was not supposed to be used for long periods of time. Then in 2024 after a visit to Dana Farber institute I was told that it was ok to use Zometta again and I was started on it every three months.
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Lizliz
Multiple Myeloma Discussion • January 27
end stage kidney failure due to multiple myeloma
Good afternoon, my husband was diagnosed with end stage kidney failure and multiple myeloma on 8/2024. His kidneys failed due to cancer and is now on PD dyalisis. Anyone with similar outcome? Do kidneys get better?
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Geoffrey
Multiple Myeloma Discussion • January 27
Death and Dying
I'm on MM medication, too old for a transplant, and running out of options. I'm old and lived a great life. I'm having difficulty with death and dying issues. Ketamine is the only psychedelic-like medication available in my state. Are there any of you who have used psychedelics, and what is your experience?