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CaraLee
Multiple Myeloma Discussion • October 21, 2023
Preparing for ASCT: Lessons Learned?
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I have my ASCT scheduled for November. I’m nervous. I know I am in good hands with my team at UNC Chapel Hill. I’ve read the literature about what to expect. I’m looking for lessons learned from those who have previous experience. Thanks!
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emeraldOyster
Multiple Myeloma Discussion • October 21, 2023
Choosing No SCT: Sharing Your Reasons?
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I was diagnosed with MM in May. Plasmacytoma, surgery, radiation, 10% plasma cells in bone marrow, standard risk. Blood chemistry is great; I feel great. My oncologist mentioned a stem cell transplant. From what I read almost everyone gets a SCT. What I want to know is whether there is anyone out there who has chosen NOT to get a SCT? Why did you make that decision?
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kealanisierra18
Multiple Myeloma Discussion • October 21, 2023
Experiencing Parkinson-like Symptoms Post-Carvykti?
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My husband recently went through CAR T therapy (Carvykti). He is about 4 months post-infusion. He spent 21 days in the hospital with some CRS and HLH. We are back in hospital as he seems to have developed Parkinson like symptoms. There is very little studied about this so attempting to see if anyone else has had a similar experience and what has become of it. Any insight would be greatly appreciated.
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SetyBlue
Multiple Myeloma Discussion • October 20, 2023
Giving Up Yogurt Post-Transplant?
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I had an appointment with a nutritionist prior to my admission to the hospital for ASCT, and one thing she told me that surprised me was that all yogurt with active cultures (doesn’t all yogurt have active cultures?) was off the table for at least 2 months after transplant. Did you have to give up yogurt for a few months?
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Ktimb
Multiple Myeloma Discussion • October 18, 2023
Carvykti Recovery: Slow Blood Counts?
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Has anyone had Carvykti and it’s taken a long time for the WBC, Platlets and Hemoglobin to go back to normal? My husband had the transplant June 20th, had a severe CRS reaction and neurotoxicity that landed him in ICU. He is on his 4 months and blood counts are still low. Marrow needs help to generate red and white and platlets.
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shaila02784@yahoo.com
Multiple Myeloma Discussion • October 18, 2023
Experiences With Teclistamab?
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Hello, wanted to know if anyone tried Teclistamab and what side effects have you experienced and how the disease responded to this particular bispecific. Thanks all!
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CMC0510
Multiple Myeloma Discussion • October 17, 2023
New MGUS: Confusing Light Chains & Dizziness?
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New patient to the group. For 1.5 years, primary care was perplexed by m-spike on routine bloodwork, .8. She sent me for consult with oncology, who ordered more bloodwork and scheduled a follow up in 6 months with MGUS diagnosis. Oncology bloodwork indicated kappa light chain 20.7mg/L and 114.8 lambda light chain (both marked as high) with K/L ratio .18. After reading these results, Dr moved my next appt to 3 months out. These numbers seem low compared to active MM patients, but confusing nevertheless. I'm 49 with overall good health. For past few months struggling with significant dizziness. Can't help but wonder if it's all connected. My mother's sister is currently battling MM, so I know all too well how difficult the diagnosis is.