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Donna
Multiple Myeloma Discussion • August 20, 2025
Interpreting a Co-Migrating Lambda Result?
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I just got my immunofixation report back and this is what it says. mmunofixation: There is a trace IgG kappa band in the gamma region with co-migrating lambda light chain Note: The trace IgG kappa's electrophoretic migration is similar to the therapeutic Daratumumab. Everything is the same except the co migrating lambda light chain. What does this mean.? I have IGG Kappa myeloma. And I am on darazalex.
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Blondie1746
Multiple Myeloma Discussion • August 20, 2025
Dual MM and ALS Diagnosis: Anyone Else?
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Is there anyone here that has a dual diagnosis of MM and ALS? I think it is pretty rare, but I have a support group member that has been diagnosed with both. Thanks,
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Rozanne
Multiple Myeloma Discussion • August 19, 2025
Family History: Should I Get Tested?
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My younger sister has MM. My older sister just diagnosed with GMUS. My question is, should I get tested? If I should, what test would be best?
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Onie1027
Multiple Myeloma Discussion • August 19, 2025
Questions About Revlimid Maintenance Dose?
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Hi my name is Gloria seen my specialist today,I stopped taking my Daratumab shots ounce a month I believe it was giving me a lot of toxins in my body I started to have black taray stool so I ask to be taken off it I've been in remission over 3years and on a mattiance revlimid 2.5mg I was told to stop the 2.5 and go back to 5mg as if the 2.5 is not going to keep me in remission are just the the revlimi,what's going here has anyone had this problem
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Donnabaxter
Chronic Lymphocytic Leukemia Discussion • August 18, 2025
Preparing for Treatment: Diet & Success Stories?
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What should i do to prepare for chemotherapy treatment. What foods are good to eat when you are going through this process? My white blood cell count is at 204. It jumped from 137 to 204 in three months. My next blood test is in two weeks to see if my blood count continues to rise. How successful has your treatments been? Thank you. Looking for some hope.
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MPANKEY
Multiple Myeloma Discussion • August 18, 2025
Switching to Maintenance for Mom's Energy?
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Hello My 86 mother was diagnosed Dec 2024. We were never given a stage she was at but im assuming early in disease her only symptom was anemia, no lesions, etc. She was started on vrd lite, rev 15mg for 21 day, dex and velcade. Tracking her lab work everything is in tn the normal range except of course hgd, hct,rbc that are kept down by meds. We would like to get her on maintenance doses so her energy levels would improve. Is that a rare request? She is a otherwise active healthy 86 yo
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Carer10
Multiple Myeloma Discussion • August 18, 2025
Navigating SCT With Heart Issues: Options?
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Hi All. First time post and hoping for some insight. We really appreciate all the knowledge shared on this forum and the support and wisdom that you all provide is worth more than you know. Was wondering if anyone has had an SCT with underlying heart issues, such as HCM? Looking into options and possible alternative approaches, is there still a long remission without an SCT?
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Isaac
Multiple Myeloma Discussion • August 17, 2025
Experiences With BMB Alternatives?
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Hello, bone marrow biopsy is very painful and traumatizing. Has anyone tried an alternative to bone marrow biopsy? My oncologist maintains that bone marrow biopsy is the only way, however, I've heard that there's an alternative through regular blood draw? I would love to hear from anyone who has experimented with an alternative method. Thank you
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Isaac
Multiple Myeloma Discussion • August 17, 2025
Relapse on Venetoclax: Sharing Next Steps?
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Hello, I had stem cell transplant for my Myeloma in September 2024. After transplant, I was on dexamethasone and venetoclax (stopped the dexamethasone after about 5 months and just did venetoclax by itself), for maintenance therapy. One year after stem cell transplant, my M-spike just showed up again. My question is, has anyone relapsed on venetoclax, and if so, what treatment did you get on next and how did that work out for you? Thank you
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crimsonElephant
Multiple Myeloma Discussion • August 17, 2025
Maintenance Questions: Lab Frequency & Nail Help?
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Hi, I have 2 questions I am 65/female and 3 years post SCT, my current status is sCR (stringent Complete Response). I am on 2mg Pomalyst for maintenance (21/7 day cycle) and have been since Sept 2022. My last appointment the idea of going to an every other month for lab work was broached. The monthly reports do give me peace when I see everything is status quo. Is anyone else on this schedule? 2nd - my fingernails are so damaged from this whole journey. Intense vertical ridges. I keep them trimmed very, very short and they still split from the tips down the vertical ridges, snagging on everything. Anyone else have this issue and found anything that works to heal them?
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Lisab
Multiple Myeloma Discussion • August 17, 2025
Experiencing Weakness and Falls on Revlimid?
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My father has MM. He was diagnosed in December 2022 . He is 84 and is on monthly maintenance, which includes Revlimid for 21 days. He sometimes experiences shakiness in his legs and then sudden weakness where he can’t hold himself up, that he ends up falling. Luckily he doesn’t break any bones, but cuts and lots of bruising. We have brought this to the oncologist’s attention, but says she is not aware of this side effect . Has anyone else experienced this?
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William
Multiple Myeloma Discussion • August 16, 2025
Sharing My Experience With Curcumin for M Spike
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I was diagnosed one year ago with SMM. I’ve read a lot about the potential benefits of curcumin to reduce M protein (M spike). We are monitoring and given that my blood work is checked every three months, I figured I can perform my own experiment with curcumin. In June, after taking 2 grams per day of curcumin for three months, my M spike dropped from 2.3 to 2.0. Causation is so tricky to determine, this could be random. I recheck in September. Has anyone else experimented with Curcumin? I also noticed, as a side benefit, I have less normal aches and pains.
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olivia
Multiple Myeloma Discussion • August 15, 2025
What I've Learned About Trusting My Team
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One thing I’ve learned on this journey with multiple myeloma is that every single body is different. What works incredibly well for one person might not be the right fit for another — and that’s okay. This disease doesn't follow a script, and neither does the treatment process. That’s why having trust in your oncology team is so important. If you don’t have that trust, it can make an already difficult road even harder. I’m not a doctor, and I don’t try to interpret every medical detail on my own. I leave that to the professionals I’ve chosen to guide me — and so far, they’ve steered me exactly where I needed to be. That said, being informed matters too. Educating yourself helps you feel more in control and ask the right questions, but it’s a balance. You have to lean on your team and let them do what they’re trained to do. As for how long treatment takes or how your body will respond — nobody really knows. It’s deeply personal. The process takes patience, trust, and a lot of strength. But with the right team beside you, the journey becomes just a little more manageable.
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DIahanna • Admin
Multiple Myeloma Discussion • August 15, 2025
Managing Insurance Costs: An ACA Tip
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If you are considering a life status change that may affect your insurance of you are covered under the ACA or Obama Care, you ay wnt to wait until after November when you will know the changes and how it will affect your associated cost. This is especially important for those on ACA that recevied subsidies. If you make more than 400% of the Federal Poverty level, expect premiums to rise sharply.
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lmcjazz
Multiple Myeloma Discussion • August 15, 2025
MGNS and Epstein Barr: Is There a Link?
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Looking for more on MGUS but actual Monoclonal Gammopathy of Neurological Significance and also its relationship, if any, to a high Epstein Barr tier
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Mtngirl
Multiple Myeloma Discussion • August 15, 2025
Kyprolis: Experiencing Edema & Shortness of Breath?
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Hi. Im currently being treated with Kryopolis. Has anyone had side effects like edema and shortness of breath? By the time of my next treatment, those symptoms are gone...but they happen everytime I have treatment.