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dooley628@sbcglobal.net
Multiple Myeloma Discussion • May 17, 2023
Pacemaker Questions: Treatment & MRIs
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Hi I was diagnosed with MMin 2015 with Igkappa myeloma. I have had 2 SCTs and have gone thru several treatment regimes with krypolis/dex being most recent. That was working for me and I decided to have Carvykti therapy July 2022 and am currently in remission. Recently I have been experiencing some dizziness with one episode where I lost consciousness for 30 seconds my primary recommended I wear a heart monitor and it recorded I had 1 episode of my heart pausing for 30 seconds a couple of times. But this episode occurred on the same day I had forgotten to take bp med and took it later in the day and then at my usual time in the morning the next day. 50 mg. Metropolo. So was referred to electrophysiology cardiologist and he wants me to get a pacemaker. Does anyone have experience with pacemaker? How does it affect your treatment? Can you get MRIs?
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amgucci
Multiple Myeloma Discussion • May 16, 2023
Experiences with Teclistamab Long-Term?
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Has anyone had Teclistamab therapy? I have to make a decision soon and I know about the initial first round treatment. What I' am interested in is the experience later on after several doses. Really need to get feed back to make a major decision. I have been in treatment for almost 9 years and have had several treatment types. My current treatment is Selinxor but I cannot stand it after 9 months.
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indigoDingo
Multiple Myeloma Discussion • May 16, 2023
Bone Med Options for High ONJ Risk?
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Hi, I am very new to the world of multiple myeloma and have just gotten a positive MGUS result, but no further testing at this point. Because I am also newly diagnosed with osteoporosis, my doctor wants me to take bisphosphonates. I have Achalasia (disorder of the esophagus) and so cannot take oral treatment--and must have an infusion. I also have Ehlers-Danlos Syndrome (a genetic connective tissue disorder) and so have continuous, chronic dental problems and poor healing. My dentist (and oral surgeon) do not think I should take Reclast because of my high risk of osteonecrosis. I also have Leiden V Factor which makes me prone to blood clots. None of my doctors seem to know what medication I can take with the lowest risk of osteonecrosis. I currently take a calcium and mineral supplement (AlgaeCal), but don't think it will be enough. Does anybody have a suggestion for what I can take with the lowest risk of osteonecrosis?
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charcoalQuetzal
Multiple Myeloma Discussion • May 13, 2023
CAR T Recovery: What to Expect at Home?
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I just found out my current treatment isn't working anymore & am looking at doing a CAR T trial or Carvytki.. Anyone doing one? Wondering how much help you needed once you were at home..
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bronzePanda
Multiple Myeloma Discussion • May 13, 2023
Still 'Newly Diagnosed' Before Starting Treatment?
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I was diagnosed in late 2016 with MGUS...more testing put me in the Smoldering MM category in 2017 and around a year later based on a few BMB's my numbers put me at officially at MM. We've watched my labs and imaging closely for years and it appears in January 2023 my Free Light Chain numbers skyrocketed, still showing no M-spike in blood (never have, weird huh?!) and still no CRAB symptoms. Odd question, but am I still considered "Newly Diagnosed" since I've had no treatment of any kind?
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peachCrocodile
Multiple Myeloma Discussion • May 12, 2023
Balancing Prostate Radiation and Myeloma Care?
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I’m on darzelax fast pro monthly revlimid zometa and get b12 shots. Now I have prostate cancer and they want me to start radiation therapy 5 days a week for 5 weeks. Did anyone go through this? Looking for some insight on what to expect. My oncologist said I need to stop the revlimid but nothing else.
Thumbnail for What are platelets? What is considered a low platelet level for someone with What is hemoglobin and why do people with acute myeloid leukemia experience low levels?? How would I feel if my platelet count is low?
Playlist: Understanding AML Labs

What are platelets? What is considered a low platelet level for someone with What is hemoglobin and why do people with acute myeloid leukemia experience low levels?? How would I feel if my platelet count is low?

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Toothpals
Multiple Myeloma Discussion • May 10, 2023
Questions on Scan Frequency & Kappa Light Chains
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A patient with active mm was on chemotherapy infusions two years and then put immediately on revlimid... How often should a pet scan be done since it has been ongoing? What is a range of kappa light free chain be around? Believe me I am searching high and low for answers before I bother you 😔 Do they have a book Multiple myeloma for Dummies