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lemonHyena
Multiple Myeloma Discussion • March 21, 2025
Sharing Experiences With Bispecifics?
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Does anyone have any experience with the Bi Specific Antibodies treatment? My doctor has started me on Ninlaro 3mg and said that when it loses efficacy, we will proceed with the Bi Specific Antibodies treatment. He said it is better and newer than Car-T. I am starting my 6th year of treatment having completed all the usual treatments.
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DIahanna • Admin
Multiple Myeloma Discussion • March 21, 2025
Sharing Healthtree Financial Aid Experiences
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If any of you have ever received financial support through a Pharmaceutical grant for medications or from a non-profit for co-pay, deductible, premium reimbursement, travel, or any other reason as a result of accessing Healthtree resources, please let me know. You can leave a comment. Much appreciated
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NKP64
Multiple Myeloma Discussion • March 21, 2025
Managing Spine Surgery Recovery During Treatment?
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Hi everyone, I am looking to hear from those who have undergone spinal decompression with stabilization (rods) for spinal cord compression. My father at 69 had spinal decompression with rods last month. He is currently in a bed/wheelchair, sitting with a brace, and undergoing physiotherapy. He is also on active myeloma treatment (KPD) I would love to hear how others have managed both surgery recovery and ongoing myeloma therapy. Specifically: Age & Overall Health – How old were you at the time of surgery, and did any other health conditions affect recovery? Recovery Timeline – How long did it take to sit, stand, or walk independently? Impact of Myeloma Therapy – Did your myeloma treatment (chemo, steroids, etc.) affect bone healing or recovery? Any delays in wound healing or increased side effects? Mobility & Quality of Life – Did the surgery improve your ability to move around and do daily activities? Pain & Discomfort – Was there pain relief after surgery? How long did it take? Rehabilitation & Physiotherapy – What kind of rehab helped you the most? Many thanks
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DIahanna • Admin
Multiple Myeloma Discussion • March 20, 2025
Managing Future ACA Insurance Costs
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For those of you are enrolled in currently or going to enroll in ACA Affordable Care Act (Obama Care) be aware that the premium subsidies are set to expire in December. There may be changes coming prior to that but no one yet knows. If the subsidies expire, the cost of your insurance premium will increase dramatically. You need to be aware of other options. The Medicaid options are probably going to be limited as well.
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Mazm23
Multiple Myeloma Discussion • March 20, 2025
SCT Didn't Work - Anyone Else Experience This?
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Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work? See less
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Mazm23
Multiple Myeloma Discussion • March 20, 2025
Navigating Progression After SCT
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Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work?
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Rajan
Multiple Myeloma Discussion • March 19, 2025
Question: Lenalidomide & Gallbladder Biopsy
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I am multiple myeloma patient and had Bone Marrow Transplant three and half years ago. I started with Lenalidomide 10 mg initially for 6 months and then 5 mg (3 weeks on and 1 week off) till now. Four weeks back I had undergone gall bladder Cholecystectomy. The biopsy report showed intestinal metaplasia. Could it be because of Lenalidomide? What is the chances of intestinal metaplasia developing into Hepato-biliary cancer?
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antrock
Multiple Myeloma Discussion • March 19, 2025
Seeking Clinical Trials for Refractory Myeloma?
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Hello, and thank you to whomever for creating this platform. I have what I consider refractory IGG multiple myeloma. I was responsive to vRD but non responsive to autologous SCT. I tried to join the EXCALIBURR trial (for any who is non responsive or have progressed disease post SCT I suggest you look into it a-sap). I however could not participate because you must have all your initial screenings complete within 120 days post transplant :( I was 129 at my first trial appointment and no one knew. I am reaching out to ask if any of you know of any cutting edge research / clinical trials I might be able to participate in outside of the standard of care. I start low dose Revlimid and Darzalex tomorrow but am hoping to try something else that could help me achieve Complete Remission (not just maintain a VGPR). Thank you in advance!
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aroybal
Multiple Myeloma Discussion • March 18, 2025
Having Doubts About SCT: Is It Worth It?
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I have been on treatment for four months for MM and next they want to do stem cell transplant. I recently was in the hospital for pneumonia and had a bad experience being hospitalized. IT's making me question the stem cell transplant and all the time needed in the hospital. Plus I dont think doctors are being truthful about the recovery process and how long it will take to feel bad to normal. Is SCT worth it? Seems like the MM comes back either way. Thanks for any insights.
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bamauro1013
Multiple Myeloma Discussion • March 16, 2025
Connecting With a Patient From a Story?
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Hi, I'm new to this page but I have multiple myeloma and have been in remission for 11 year's. I read the patient story about John and Ann Bailey and would like to connect with them. Any suggestions on how I can do that? Sincerely, Barbara Mauro
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Getta293
Multiple Myeloma Discussion • March 15, 2025
Early Relapse Post-SCT: What Was Your Next Step?
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Hello, after 8 months of my SCT my MRI shows a new ill , Dr suggested Car-T but I want to get a different treatment, anyone relapse a short time after SCT , and what treatment they received. Thank you