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NKP64
Multiple Myeloma Discussion • November 30, 2024
Understanding Relapses and Treatment Patterns?
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Hi all As I try to understand relapses, I have a 3 part query. a) how many relapses could be possible? b) Also does every therapy post relapse has the same pattern- induction>consolidation>maintenance c) Is it possible to gain a better consolidation after relapse than the previous cycle? Many thanks
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alexandra.sazonova.prokouran@gmail.com
Multiple Myeloma Discussion • November 29, 2024
Experiencing Jaw Pain on Denosumab?
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Has anyone with multiple myeloma experienced jaw pain while on denosumab? I have multiple myeloma and have been receiving denosumab every three months. Over the past six months, I underwent two dental implant procedures in my upper jaw. Unfortunately, I developed severe jaw pain after the implants, prompting their removal. While the pain has improved, it persists in a milder form in the lower jaw. A PET-CT scan showed no structural bone damage in the jaw, only inflammation. Could this pain be related to an infection from the implants, or is it more likely osteoarthritis or osteonecrosis? Could the denosumab be a contributing factor? If so, would discontinuing denosumab help alleviate the pain or is it a permanent issue? Thank you very much, grateful to have access to this community!
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ChioOsuna
Multiple Myeloma Discussion • November 27, 2024
Sharing Experiences With Bispecifics
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3-Year Real-World Study on Bispecific Antibodies This observational study explores the real-world experiences of patients using bispecific antibodies for multiple myeloma treatment. We’re gathering insights on every stage—from initial awareness to quality of life after four months of treatment. Learn more here: https://healthtree.org/myeloma/curehub/private/research/EuXByoiOsjjWtVmLuu4M?utm_source=social+media&utm_medium=meta&utm_campaign=3yearbispecifics&utm_content=general
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NKP64
Multiple Myeloma Discussion • November 27, 2024
M-Spike Rising on Maintenance - Similar Experiences?
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My father aged 69, had his MM detected in January 2024 with M spike at 2.73 He had 1q gain. He was on VRD treatment and M spike had reached 0.72 by April in just 3 months time. Bortezomib was stopped after total 5 months due to early signs of peipheral neutropathy. And Bortezomib was stopped and he continued with Dex(20mg) 2 times a month and Lenalidomide (10mg). August M protein was 0.56 Few days back, he complained of backache and as was the plan of doing M protein test every 3 months, we did and it has increased to 1.2 Is it very concerning? Has anybody had a similar journey? Would be very useful to understand the same? Thank you!
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Iliana • Admin
Multiple Myeloma Discussion • November 27, 2024
Online Yoga Study for Myeloma Symptoms
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Researchers at the University of Arizona are conducting a national clinical trial to determine whether yoga can improve the physical 🏋️‍♂️ and mental 🧠 health of myeloma patients. This study aims to assess how yoga affects symptoms like pain 🤕, fatigue 💤, anxiety 😟, and overall quality of life. Patients on active treatment can join weekly online yoga classes 🧑‍💻 and track their progress 📊 to help determine the benefits of this practice. While HealthTree will not be facilitating this study, we recognize the importance of physical activity 🚶‍♀️ within the myeloma community and wanted to share this exciting research opportunity with you. Learn more here: https://buff.ly/4eVRhJu
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RickJ
Multiple Myeloma Discussion • November 27, 2024
Managing High-Risk 17p Without An SCT?
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People with 17p (TP53) R-ISS stage 3, how has your life been since diagnosis. I am 68, was diagnosed 9 months ago did not do the SCT and have responded well to treatment so far. Am now on maintenance. I have 37% involvment of 17p (TP53), I also have 4p16 (3 copies) in 69%, 11:14 in 73%.
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alexandra.sazonova.prokouran@gmail.com
Multiple Myeloma Discussion • November 26, 2024
Connecting Dara Reactions and High PTH?
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Has anyone experienced or heard of severe reactions to daratumumab? During recent chemotherapy, I had a severe reaction with nasal swelling/ angioedema and pain, making it impossible to continue treatment, along with significant nausea. Three months ago, I had blurry vision for five hours after another reaction. My recent tests show elevated parathyroid hormone (PTH) levels, and I’m unsure if this is related. I also had persistent jaw pain that resolved after removing two dental implants. Could these issues be connected? Any advice would be greatly appreciated!
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TimJohnson
Multiple Myeloma Discussion • November 26, 2024
Studies for Good DVRd Response, No ASCT?
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Are there any clinical studies for newly (recently, as in February 24) diagnosed MM patients who responded really well to DVRd and are NOT proceeding to ASCT?
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Long4Tahoe
Multiple Myeloma Discussion • November 25, 2024
Experiencing Kyprolis Side Effects?
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Would like feedback on Kryprolis treatment journeys. I have low risk multiple myeloma, but my numbers have been creeping up which means my immune system is crashing down. Doc wants me to do Car-T Cell Therapy which I am in agreement with. In preparation I started carfilzomib a bit over 3 weeks ago. First infusion was a half dose, along with an anti nausea and dexamethasone. Handled well. Second infusion was full dose with Dex, I was okay that day, day two felt like I was coming down with the flu, day three and four slept, could hardly eat. Day four spiked a 101+ fever that broke after a few hours. Day five I feel like I'm coming alive again but I'm weak. Just had a repeat with my third infusion and feel even weaker than I did last week. My hemoglobin is down to 7.9. Not too bad but low. Is this anyone else's experience? Thank you!
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Dawnmjo
Multiple Myeloma Discussion • November 21, 2024
Can Re-Vaccinations Impact FLC Levels?
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Hi, I am 14 months post AST and have recently started the re vaccination process. I was wondering if that can impact your bloodwork specifically Kappa Lamba FLC? Thanks
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DIahanna • Admin
Multiple Myeloma Discussion • November 21, 2024
Navigating 2025 Revlimid Coverage Changes
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Hello Everyone, Please make sure you check your Medicare Advantage plans and stand a lone Part D. Most of these plans will no longer be covering Revlimid or Lenalidomide for 2025. This is presenting a problem for many Patients. Speak with your doctor to get exceptions. Check your other medications as well.