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Iliana • Admin
Multiple Myeloma Discussion • September 18, 2025
Sharing Hope on the Path to a Cure
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Is curing myeloma really possible? In this HealthTree University video, world-renowned myeloma expert Dr. Jagannath shares why he believes we are on the path to curing multiple myeloma. He explains the latest progress in treatments, research breakthroughs, and what gives him hope for the future. Watch the full video here: https://www.youtube.com/watch?v=zFSUxJXxOAg
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Cawmfw1
Multiple Myeloma Discussion • September 18, 2025
Non-Narcotic Options for Severe Spine Pain?
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My husband was diagnosed with MM January 2024, with spine fractures and spinal lesions. He also has disc bulges, and spinal stenosis caused by arthritis and pinched nerves. He suffers from constant sever back pain. He is adverse to taking narcotics or any drugs that will impact his mental capacity as he is experiencing brain fog and severe fatigue from the maintenance regime of Dara/pomolyst. He is doing Accupunture weekly and swimming 3 times a week. Has anyone with similar issues tried the steroid injections in the lower spine? If so what were the results? How often are you getting the injections? Are there other options that you have found to be effective? Has anyone found PT to be effective? He had a bad experience with PT before they realized he had spine fractures and is very hesitant to try it again
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3sisterskaye
Multiple Myeloma Discussion • September 18, 2025
Starting Talvey: Experiences & Side Effects?
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I’m going to start Talvey this week after trying polmalist and krypolis My sct lasted about 9 months. Trying to bring my light chains down to have Car-t. I was wondering how well Talvey worked for you and if the side effects were doable? Also how long before you saw results? I’m 71 and female. I appreciate any input. Thank you.
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1finegrandma
Multiple Myeloma Discussion • September 18, 2025
Carvykti Response Timeline: Lingering M-Spike?
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Just curious to those that have gone thru the Carvytki CAR T, how long after the infusion did you start seeing a response? I just had my first serum myeloma panel and my light chains are basically nonexistent but I am still showing a .4 m-spike. I am 28 days post CAR T. I see the doctor today, but I am just curious if others still had an m-spike that continued to go down. Thank you in advance for your responses.
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EveMu
Multiple Myeloma Discussion • September 18, 2025
Managing Severe Back Pain During Relapse?
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I was diagnosed with myeloma in 2023 M Proteins was very high.I have very painful lower back pain . At times the whole back. It makes it difficult to sit, walk, stand, or lay down. Travelling short distances has become a challenge for me ,be by car or walking . Has anyone had this problem I was on Bortezomib injection and Diametheson. This was in 2023 to February 2024 with one week off intervals. The MProteins dropped quite significantly. In January 2025 went for my routine check up, the M Protein's started rising up again. I was put on Linalidomide and Diametheson . The M Protein is dropping but at a slower pace . Has anyone has this problem? I do some walking around the house the property is big, and I do household work which does not cause me to bend or lift heavy objects. I can't post my results for now as I will have to compile all of them later.
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John1
Multiple Myeloma Discussion • September 18, 2025
Experiencing Low Platelets on Darzalex?
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Hi, In May 2021 I was told I have SMM. In Nov 2023 started on Darzalex, IVIG nothing out of the usual and outside of minor stomach distress was doing fine. In Mar 2025 my platelets dropped and even with the normal course of drugs have not improved. Currently my platelet counts are averaging around 15,000 when I receive platelet transfusions. Next week I’m scheduled for radiation on a spot on my back. Outside of being tired all the time I have no bone pain. I’m a semi-healthy 81 year old male. Seeing little mention on this forum my question is this something that other people have experienced?
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DIahanna • Admin
Multiple Myeloma Discussion • September 17, 2025
Navigating Medicare Open Enrollment Changes
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Everyone need to be aware of and read the annual changes to your Medicare plan which you will be receiving soon if you haven't already received. There are many changes this year including premium, copay, deductibles and max out of pocket increases as well as changes to covered providers. Many PPO plans are being dropped as well. Make sure you have the coverage you need. I will be hosting an open Q and A on the 1st Tuesday in October right before open enrollment begins to help you navigate this season.
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Dangargrave
Multiple Myeloma Discussion • September 16, 2025
Managing Revlimid Rash: Experiences or Tips?
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Hello I am 11 months post SCT After about 4 mos of 5mg daily lenalidomide (Revlimid) maintenance I developed a rash. It started as looking like a heat rash around my waist and developed into a whole body rash, looking like textured reddened skin. It itches a lot, especially if I’m hot. My docs took me off of maintenance for several weeks and gave me a prednisone pack which helped greatly. The rash returned but at a turned down level. I am now back to taking Rev every other day and using prescription lotion. It does seem a bit worse since being back on the Rev. At this point my docs are taking a wait and see approach. I know this is a common side effect. Does anyone have any insights or experiences to share. Other than this challenge things are going well for me and I am back to my normal activities Thank you !
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Iliana • Admin
Multiple Myeloma Discussion • September 16, 2025
Targeted Therapy Clinical Trial Opportunity
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Targeted treatment are a potential treatment option for multiple myeloma. Join a clinical trial to advance research on targeted treatment, and make a difference in the lives of people with multiple myeloma.  For more details about Pfizer’s MagnetisMM clinical trials, please visit: https://www.pfizerclinicaltrials.com/MagnetisMMClinicalTrials
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Donna
Multiple Myeloma Discussion • September 16, 2025
Concerned About Rising Kappa/Ratio Numbers?
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Well I am thinking I’m headed to a relapse. I got my bloodwork results today and my kappa is 21.4 and my ratio is in the 2 range. My ratio has been a little elevated for three months but went down in August. In July my bmb was good. less than 1%. Is there any reason besides a relapse that my numbers could be off?
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Anne66
Multiple Myeloma Discussion • September 15, 2025
Experiencing Night Sweats on Isa-KD?
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Hi all. I am currently on treatment of Isa KD Isatuximab, Carfilzomib and Dex, only got 2 1/2 years of remission after SCT. I’m doing ok with the treatment every week at first now 3 weeks on and one week off. I’m on my Third round, I’ve had some vomiting the night of the treatment, so now I take a ondansetron the day of. But I’m getting night sweats and hot flushes most nights? I’m 59 years old and on HRT have been for 8 years so it’s not menopause? The night sweats started coming back, when my numbers started rising, which I think is normal, but my numbers are back to normal now, so I expected this to stop? Has anyone else had this experience? My worry is that it could be a secondary cancer? Nights sweats are a symptom of cancer.
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Gerii2002
Multiple Myeloma Discussion • September 15, 2025
Feeling Lost and Scared About "Watch and Wait"
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I need help! Lots of help! I got my first cancer from 911, I worked for the federal gov. I didn't know, and also I was scared to death, by the time they found it it was a stage 4!!! Just like Farrah Faccett,and she died, I just kept suffering. Let me tell you, as my life started very hard, I was unwanted. And my nerves were a wreck! After the first cancer, than a heart attack also from 911, and Let's not for get the myltuipy myloma, which seems to come and go???? I don't believe they want to treat me because of my age,, I can't walk well enough to work my brain is mixed up, I keep going to drs. Who know less than I do, like no one care. Tomorrow, I want my mbloodmdrawn imwant to dpsee if it is getting better, worse or just staying the same. One dr. Ind, wants to put me on medicine, the dr, in Tampa say no need for treatment yet, keep,watching, but they found it in my bone morrowm2x and tell me it don't go away . So can I say I was dignised on2018 and now it's 2026,that is 8 years, how can it vibe in your bones, and than one day, it's just going to explode like it did to,my friend and my doctor,mthry had there lastm6 months in Hell. Please,I need help,with all this, what can I do I can't walk it hurts so much and I need a job .
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selenasuarez
Multiple Myeloma Discussion • September 14, 2025
Advice on Starting Induction for High-Risk?
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My mom was just diagnosed yesterday with IgG Lambda Multiple Myeloma with high-risk cytogenetics (del17p – 7%, gain 1q – 6%) from a oncologist/hematologist. We want to start induction treatment ASAP, but the soonest myeloma specialist appointment is late November. The oncologist (not a specialist) has recommended quadruplet Dara-VRd as induction therapy. My questions for the group: - How critical is it to see a myeloma specialist before starting induction therapy? - Has anyone compared Dara-VRd vs Dara-KRd, especially for high-risk patients? - Are there any other induction therapy options we should consider before moving forward? I really would appreciate any help as I am freshly new to navigating all of this. Thank you all so much!
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BarbaraLove23
Multiple Myeloma Discussion • September 14, 2025
Papaya Leaf Extract for Low Counts?
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Have anyone that taken Chemo with low platelet and red blood cells tried the papaya extract leaves if so did it work to bring them back up