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KappaKing
Multiple Myeloma Discussion • May 7, 2024
Sharing My Path While Awaiting Diagnosis
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Hello. As of 2024-05-07 I haven't yet been formally diagnosed - still undergoing a battery of tests. It looks to me that it'll be either IgA kappa smoldering MM or active MM. I have no symptoms yet. Suspicion of a plasma cell dyscrasia was triggered by blood test results for an unrelated issue I was having. - My m-spike on 2024-02-13 was 1.29 in the beta region of the SPEP test and rose to 1.39 on 2024-04-09. Gamma region is low. - My FLC ratio is aggressively moving upwards. It was 45 on 2024-02-13, jumped to 72 on 2024-04-02 and then jumped again to 89 a week later. If this trajectory continued as expected, I'm past the dreaded 100 level for MM. - My IgA level is around 2200 mg/dL as of 2024-04-09. - Bone marrow biopsy done on 2024-04-02 showed neoplastic plasma cells that represent 15%-20% bone marrow cellularity. - Urine immunotyping done on 2024-04-09 shows two free kappa paraprotein peaks. - Urine protein electrophoresis done on 2024-04-09 shows two m-spikes: #1 is 4.8% and #2 is 3.1%. Interpretation on the report is, "Two peaks in the beta region consistent with paraprotein peaks". - Bone density test done on 2024-04-12 showed osteoporosis in lumbar region. I start receiving Xgeva shots 2024-05-08. - PET-CT scan done on 2024-04-17 showed no lesions and no sign of malignancy. - As of 2024-05-07, still waiting on the FISH / cytogenetic analysis report(s). Calcium level is normal. No sign of renal insufficiency. No anemia. No bone lesions. While not yet committing to a diagnosis, my hema-onco said treatment in my future is likely. He wants to do some more blood work to establish a definite trend in the numbers and to see if I reached that myeloma defining event of FLC ratio >= 100. When the time comes for treatment, he recommended an outstanding myeloma specialist at Mount Sinai. I'm confident that I'm in good hands.
Thumbnail for Acalabrutinib vs Zanubrutinib for Relapsed/Refractory CLL |  Adam Kittai, MD | ASCO 2023
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Acalabrutinib vs Zanubrutinib for Relapsed/Refractory CLL | Adam Kittai, MD | ASCO 2023

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ivoryCentipede
Multiple Myeloma Discussion • May 6, 2024
Delayed Transplant in the US: Your Experiences?
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Hi there, as a newly diagnosed myeloma patient in the Netherlands I personally prefer the option of delayed transplant instead of upfront transplant. Giving quadruplet therapy the chance to do a good job and hopefully reach Mrd negativity without transplant. My myeloma specialist in the Netherlands says this is not really an option in the Netherlands yet. He says it’s more an option in the United States. So I have some questions about this option for my fellow patients in the United States: 1) Anyone having experience with this option? 2) If so: How many cycles is the induction therapy when you choose this option in the United States? 3) What is maintenance therapy when you choose this option? 4) What are the criteria for starting the transplant when it is needed later on? 5) Do you start induction therapy again when you are on maintenance therapy and get a relapse or do you go straight to transplant when this is needed? Hope to hear and learn from your experience in the United States with the option of delayed transplant. Wishing all Of you all the best.
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maroonGoose
Multiple Myeloma Discussion • May 3, 2024
Weighing Talquetamab vs. Selinexor Combo
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I had CAR T first (I am a long time survivor, as my med was not working well so the CAR T. I have had 4 lines of therapy) CAR T did not work for me. I then was given Teclistamab. this did not work. Now Dr is recommending talquetamab. I need to travel to receive the shots after hospital stay, about 2 hours each way. I am not adverse to this if it works but CAR T and teclistemab did not work t all for me. I am now trying to decide on talquetamab or a treatment to include Selinexor etc. all oral. I wonder if a break from Bispecifics would be an advantage in that my T cells would have some recovery. Plan B so to speak is Selinexor, Dex and Pomalidamide. SOme tough choices here. The side effects of Talqueamab are difficult. Any thoughts? I have searched Health Tree hoping to get some thoughts that will guide me. Thankyou!
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Fishmaw731
Multiple Myeloma Discussion • May 2, 2024
Connecting on IGM Multiple Myeloma
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Does anyone on here have IGM Multiple Myeloma? I was diagnosed at the beginning of January 2018. Originally the doctor thought is was Waldenstrom but the bone marrow biopsy confirmed IGM MM. It took several months to get it under control we finally tried Darzalex and that seemed to be working at the moment.