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kwm69
Multiple Myeloma Discussion • June 24, 2025
Darzalex and M-Spike Test Interference?
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7 months post transplant and had a complete response. Been on maintenance of Darzalex ( every other week) and Revlimid ( 10 mg). Originally diagnosed last year with lambda light chain. (IGG). This week my monthly results came back and, My M spike changed from zero to .21 and the notes said IGG type Kappa. I read that Darzalex can cause a false positive on monoclonal test. Anyone else experience this? Your thoughts?
Thumbnail for Multiomics Reveal MRD Kinetics & Early Immunotherapy Response in Myeloma | Bruno Paiva, PhD | #EHA2025
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Multiomics Reveal MRD Kinetics & Early Immunotherapy Response in Myeloma | Bruno Paiva, PhD | #EHA2025

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Latitude38
Chronic Lymphocytic Leukemia Discussion • June 24, 2025
Sharing My Unexpected Diagnosis Story
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I hadn’t seen a Dr in probably 49 plus years ,l then during the pandemic I caught a case of pneumonia that just wouldn’t go away . I couldn’t breathe and was rushed to the hospital where I was diagnosed with stage 2 CLL . The poor nurse when looking at my X-rays said “ so Gary how long have you had cancer “ i said “ say what “ i came unglued …..:: she never said the C word again ,but we did become friends .Stage 2 wait and see CLL with 81 parts lymphocytes per unit measure
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Julia
Multiple Myeloma Discussion • June 23, 2025
Experiencing Red Face After Darzalex?
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Hello All! I hope today finds you well. I'm on a maintenance protocol that includes a monthly Darzalex Fast pro injection. I tolerate it well with no major side effects except...1 to 2 days after the injection I get a red face - cheeks, nose mostly. Lasts the day and then goes away. Anyone else on Dara experience this? Doctors and nurses say "wow - that's a new one."
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gknautz
Multiple Myeloma Discussion • June 23, 2025
Velcade Maintenance Duration: Experiences?
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Maintenance therapy: 59 yo post SCT poor cytogenetics did sarc, rev, val, dex for induction now starting Dara, vev, val, dex for maintenance. Trying to get to a every monthly only schedule. My question is how long are people staying on Velcade, assuming no adverse events? Anyone doing anything else this in the situation?
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JohnEustace
Multiple Myeloma Discussion • June 23, 2025
Sharing a Helpful New Myeloma Podcast
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I was diagnosed with MM in Oct 23 and after 9 months of treatment went into remission and have remained so thus far. I'm based in the UK so have the benefit of our wonderful National Health Service. Recently two outstanding consultants who specialise in treating myeloma have started a weekly podcast. We're now on number 13 and it has been a learning exercise like no other, riveting in fact. Delivered in an easy to listen style but full of information you'd never normally get with limited time appointments. I think it complements Health Tree Foundation work and adds to the patient knowledge. Please try it out themyelomaminutes.com available pretty much on all podcast suppliers. If you like it and it helps be sure to tell others and do tellme so I can pass on your thoughts
Thumbnail for Arlo‑Cel, a GPRC5D CAR‑T, Breakthrough for Relapsed/Refractory Myeloma | Krina Patel, MD | #EHA2025
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Arlo‑Cel, a GPRC5D CAR‑T, Breakthrough for Relapsed/Refractory Myeloma | Krina Patel, MD | #EHA2025

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Gerii2002
Multiple Myeloma Discussion • June 22, 2025
Concerned About Sharing My Portal Login
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I was asked to give my portal and pass word, to someone in this organization!! I am so happy with this company it more help than I ever got from my worker at another company! Why am I writing this, because my family says it's against the law, and who knows what they will do with it, can anyone tell me what is going on? Honest I have been scared so so so many times I am afarid, now being sick thinking isn't my first choice, but I don't want to lose this. Can I get some reply's? Thank you.
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wirehead073
Multiple Myeloma Discussion • June 22, 2025
Revlimid Side Effects: Switching to Pomalyst?
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Hi all, I’m in my 2nd month of induction therapy and revlimid has been a nightmare! I started at 25mg but it made my scalp itch and burn and the skin on my chest and back sensitive to touch. I’ve since had the dose reduced to 15mg it got a little better but I don’t think i can do this for 4 cycles! I’m also getting palpitations. Has anyone had this and switched to Pomalyst? Anyone taking pomalyst instead of revlimid without side effects? Thanks!!
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JPP2023
Multiple Myeloma Discussion • June 22, 2025
Balancing MM and a New DCIS Diagnosis?
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Hi all, I had my ASCT in Jan 2024 and have been on Revlimid/dara maintenance since. Now I have found (after an suspicious mammogram and subsequent breast biopsy) that I have Ductal Carcinoma In Situ. I will need to meet with a surgeon to discuss options. From what I have read most folks who have DCIS have a lumpectomy, several rounds of radiation and go on hormone blockers for a period of time. It is very successful and some say curable. However, talking with my MM oncologist she suggested that if I have a mastectomy I may not need any of the other treatments. With everything myeloma brings she was suggesting in the long run it might be an easier way to go. One less thing to think about and no worries about what the radiation and hormone blockers are doing. Has anyone had DCIS and MM at the same time and what were your treatments and outcomes? Thanks. Judy
Thumbnail for Can AI Predict Cytokine Release Syndrome Early? New Insights from EHA2025 | Yi Lin, MD, PhD | #EHA 2025
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Can AI Predict Cytokine Release Syndrome Early? New Insights from EHA2025 | Yi Lin, MD, PhD | #EHA 2025

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Tammy
Myelodysplastic Syndromes Discussion • June 21, 2025
Coping With Falls as a Caregiver
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My husband's chemo did not work for his MDS and he does not qualify for a transplant. He was given 1-3 years but he has just given up. He has fallen twice now and I cannot get him because of my health issues. He fell getting out of the shower this morning and I had to call 911. I am going to make an appointment with out trustee to see if we could get help getting a walk in shower.
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AP
Multiple Myeloma Discussion • June 21, 2025
Differentiating Bone Pain From Muscle Pain?
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Shoulder pain My left shoulder has been paining since about 2 months, i visited the PT and he seems to think it is a muscle pain. I have been doing various exercises but of not much help. As the pain has been there for about 3 months, i am worried it may be due to bond damage due to myeloma. Wanted to check of bone related pain symptoms? Is it very painful? Consistent throughout the time it started? Any other description of the bone damage related pain would help me.
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Camaroman
Multiple Myeloma Discussion • June 21, 2025
Managing Thigh Nerve Pain and Numbness?
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Anyone have any issues with a nerve from the back going down to the right thigh and causing numbing, burning feeling in the right thigh as well as some pain. My doctor said there's degenerative disc issues and slight arthritis in the back, what have you done to resolve this issue, Thanks