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Suzukiviolin25
Multiple Myeloma Discussion • April 29, 2025
Sharing Experiences with t(11;14) Mutation?
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So my MGUS (diagnosed in 2017) has progressed to smoldering myeloma (20-30%) involvement (bone marrow biopsy 10 days ago) with kappa lambda light chain ratio of 128 and M spike of 2.6. No anemia, normal kidney function and normal calcium numbers. I am in a close watch and wait with labs in 6 weeks and a possible total body MRI. My last PET was clear about a month ago. Just received FISH testing results and I have the following t(11;14) mutation. Does anyone have this same mutation? Have you responded well to treatment? I have IgG Kappa if that helps. I am being cared for at MSKKC for more context.
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LieveFamke
Multiple Myeloma Discussion • April 27, 2025
Managing Thin, Peeling Nails - Any Tips?
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I'm 54 yr F, diagnosed in February 2024. Had 4 months of induction and then an ASCT in July 2024. Started on 10 mg of daily Revlimid in Sept, was dropped down to 5 mg daily in January because I was still quite tired and had a bit a neuropathy in my thumb. That changed helped. I had verteobroplasty in the beginning of March (6 vertebrae were done). I am getting Zometa infusions every three months. So that's the background: I'm finding my nails are very thin and are peeling. I am keeping my nails very short but was wondering if anyone has added supplements in like biotin or collagen? Or do you have any other suggestions?
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PatsyCare
Multiple Myeloma Discussion • April 27, 2025
Managing Comfort Pets During SCT: Tips?
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My daughter will be having SCT in May. Hopefully, this doesn’t sound like a foolish question but she has 2 small dogs who have provided so much comfort to her since her diagnosis of stage 3 MM in October ‘24. The dogs sleep on her bed and really haven’t left her side. My concern is that once she gets the Hickman port placed next week and then the SCT, how close should her 2 little dogs be to her? I have my opinion but would appreciate how others have handled this type of situation.
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Shay22
Multiple Myeloma Discussion • April 26, 2025
PCL Prognosis & Next Steps Without a Transplant?
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Hello 👋 I pray for everyone with this horrible disease. My mom is 75 and recently diagnosed with Plasma Cell Leukemia. She is not a candidate for SCT due to age and other comorbidities. She is receiving DRKD treatment and is doing very well...for now. Her numbers have improved significantly and she's technically in a partial remission. Im so scared for her. Im just wondering what her quality of life will improve. Im wondering what happens when this cocktail is no longer working for her. What is her survival plan or life expectancy for someone who can't have SCT? She is high risk RSS III .
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sck#2023
Multiple Myeloma Discussion • April 26, 2025
Pomalyst Side Effects: Allergy Symptoms?
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Relapsed on linalidomide 25 mg and Ninlaro 4 mg and now doing Darzalex FasPro, Dexamethasone, Palmalyst 4 mg. After 2 treatments with Darzalex/Dex by day 8 having what seemed liked seasonal allergy seems to be side effect of Palmalyst anyone had similar experience (started with sneezing, progressing to lots of mucus production and coughing). Doc seems to think body will adjust.
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SetyBlue
Multiple Myeloma Discussion • April 25, 2025
Requesting ACA Premium Breakdown for LLS?
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I need to provide a letter of my 2025 ACA monthly premium breakdown to the LLS Co-Pay Assistance program. I just need a statement from the marketplace in writing that shows the premium amount breakdown for me and my husband. Basically LLS needs to see how much of the premium is my portion and which one is my husband’s because they will only pay for my portion, of course. How do I contact the marketplace about my 2025 monthly premium breakdown? Thank you in advance for your help.
Thumbnail for What is central nervous system (CNS) myeloma and how is it treated? Is there a difference between a plasmacytoma located in the brain and central nervous system (CNS) myeloma?
Playlist: Multiple Myeloma Basics 2

What is central nervous system (CNS) myeloma and how is it treated? Is there a difference between a plasmacytoma located in the brain and central nervous system (CNS) myeloma?

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