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AP
Multiple Myeloma Discussion • February 21, 2025
Diet to Slow SMM Progression? Thoughts on Vegan?
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Are there any diet restrictions to slow down the progression from SMM to MM? I have read here and there that vegan diet is better for people with SMM. Is there any downside switching to vegan?
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DIahanna • Admin
Multiple Myeloma Discussion • February 20, 2025
Heads-Up: Potential Medicare/Medicaid Changes
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Hello All. Just to keep you in the loop. There may be changes coming soon to Medicare and Medicaid as the New Administration has indicated they like a Republican lead bill to heavily cut Medicaid spending and cuts to Medicare. Some state are already trying to back out of MEdicaid expansion that has helped cover the cost of care for tens of millions of people including children, the disabled and pregnant women. I will let you know more as it moves through the chambers. This is sure to be contentious. In the meantime, make sure you have the best coverage for you and if you are covered by Medicare and or Medicaid make sure you do your part. Reapply for Medicaid benefits if you qualify before your year runs out. If not you will be automatically be dropped.
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LL1967
Multiple Myeloma Discussion • February 20, 2025
Outpatient CAR-T: Tips and Experiences?
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Hello all. I’m looking for input/tips/suggestions from people who have gone through Car T as an OUTpatient. While it’s the same treatment as inpatient, the outpatient presents different circumstances. My target is May and we will be renting an apartment for 30 days to be near the hospital. Hoping to benefit from your experiences. Thank you!!
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lizschwartz
Multiple Myeloma Discussion • February 20, 2025
Experiences Adding Venetoclax to Darzalex?
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What is your experience with Darzalex/Daratumumab ( sub q injections every 2 weeks) and adding Venetoclax? I am considering this new treatment option. I am currently on Darzalex/Daratumumab with Dexa. I have AL Amyloidisis and MM - AL labs are good, it is the MM that remain elevated.
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tanSeagull
Multiple Myeloma Discussion • February 19, 2025
Sharing My Switch to Valcave After Revlimid Issues
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I have been taking Valcave for maintenance. It's been working for me the past 4years. I go once a week for treatment but it was better then Revlimid. That medication gave me DVT in my right leg and PE in my lungs. This is just my experience with Revlimid. Stay strong and talk with your doctor about the difference med that could help. I'm praying for all of us to stay strong.
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carolartl@verizon.net
Multiple Myeloma Discussion • February 18, 2025
Long-Term Remission & Managing Neuropathy
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I WAS TAKEN OFF RVD ABOUT FOUR YEARS AGO BECAUSE BECAUSE MY HEALTH HAD BEEN DETERIORATING. I HAVE TURNED OUT TO BE IN TOTAL REMISSION SINCE THEN AND HAVE HAD NO TREATMENT. MY MAJOR PROBLEM HAS BEEN SEVERE NEUROPATHY AND LUNG ISSUES CAUSED BY MY CHEMOTHERAPY. I WAS OVERDOSED BY VELCAID WHICH CAUSES NEUROPATHY.
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indigoMeerkat
Multiple Myeloma Discussion • February 18, 2025
IGA Myeloma Relapse: Sharing Experiences?
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I was diagnosed with IGA multiple myeloma four and a half years ago. I completed, 16 weeks chemotherapy and then completed a successful stem cell transplant. Following my 100th day testing showed complete remission. Remission lasted until last May when a solitary plasmacytoma was detected in my upper humerus bone. A PET scan showed the tumor very clearly. But no other site involved . Following radiation I started daralex faspro. An additional PET just before surgery showed multiple lytic lesions throughout my body. Surgery was suggested because of damage to the bone and worry of fracture. I had a complete reverse shoulder replacement in November. Following surgery Velcade and dexamethasone were added to the chemotherapy. These were to work to reduce the lesions. They seem to be working but on a lumbar vertebrae it not recovering as one would hope. So we continue chemotherapy and will be back to radiation on the vertebrae. The hope is to get back to remission. Does anyone have experience with IGA? It's the second most common but a little more aggressive than IGG. Thanks for any experience you can share.
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Iliana • Admin
Acute Myeloid Leukemia Discussion • February 18, 2025
Find Your Local Support Team
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You're not alone in facing blood cancer. At HealthTree, we know how important it is to have a strong support system. That’s why we’ve created Regional Cure Teams—volunteer-led groups that connect and support patients in their own communities. Our Cure Teams are spread across the country: 🔹 Pacific 🔹 Rocky Mountain 🔹 Southwest 🔹 Midwest 🔹 Southeast 🔹 Northeast 💙 Find your team here: https://qrco.de/CureTeams
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Iliana • Admin
Multiple Myeloma Discussion • February 18, 2025
Finding a Local Support Team
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You're not alone in facing blood cancer. At HealthTree, we know how important it is to have a strong support system. That’s why we’ve created Regional Cure Teams—volunteer-led groups that connect and support patients in their own communities. Our Cure Teams are spread across the country: 🔹 Pacific 🔹 Rocky Mountain 🔹 Southwest 🔹 Midwest 🔹 Southeast 🔹 Northeast 💙 Find your team here: https://qrco.de/CureTeams
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Iliana • Admin
Multiple Myeloma Discussion • February 18, 2025
Trial Opportunity for Relapsed Myeloma
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People with multiple myeloma which has come back or stopped responding to treatment may be able to join the MagnetisMM-32 trial. Together, we could make a difference.     For more details about Pfizer’s MagnetisMM-32 clinical trial, please visit: https://www.pfizerclinicaltrials.com/nct06152575-multiple-myeloma-trial?cmp=789d7f1a-53cf-4154-bafc-ad212d49eef7&ttype=FB
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Lindsay
Multiple Myeloma Discussion • February 17, 2025
Experiences With Maintenance Alternatives?
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Hello everyone, I am looking for any words of wisdom on maintenance. Has anyone here done RVD for 4 months (I think that’s 1 round? ) numbers go to zero, remission and not done any maintenance medication? What are the alternative methods? My fiancé is 41 and is in excellent physical condition. He only has a couple weeks left of RVD and is looking for alternatives to maintenance. Thank you ♥️
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goldPuffin
Multiple Myeloma Discussion • February 17, 2025
Unexpected Lambda Rise With a Normal Ratio?
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Hello Everyone, I'm a Kappa Light Chain Myeloma patient who underwent a stem cell transplant in March 2024. Since July 2024, I've been on a 10 mg dose of Lenalidomide as maintenance therapy. Over the past seven months, my light chain ration has remained in the "green zone" with both Kappa and Lamda slightly above the upper limitg. However, my recent test results showed an unexpected increase: my lambda light chains rose to 45 (from 17 last month), while kappa remained at 22. Despite this, my kappa/lambda ratio is still within the normal range. Has anyone else experienced a similar situation? I'm hoping this is just a one-time anomaly. As my Myeloma was a Kappa light chain disease, could this elevation of Lambda be considered non -specific? My results shown below: