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Dave P
Multiple Myeloma Discussion • April 11, 2024
Managing Kidney Disease With Myeloma?
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Anyone else here dealing with Stage 3 kidney disease also? Any advice? Might have to switch meds as the dara/Pom doesn't seem to be being very effective...
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Slapshot04
Multiple Myeloma Discussion • April 11, 2024
Managing Kyprolis Heart Rate & Insomnia?
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After my first relapse last fall, I was placed on a DKd regimen. Very effective, but the Kyprolis causes my heart rate to elevate by 50% the night of the infusion, which makes it impossible to sleep. The Dex doesn’t help either. Has anyone experienced this and found a way to lower your heart rate and overcome the insomnia?
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fuchsiaMonkey
Multiple Myeloma Discussion • April 10, 2024
Journey After Early SCT Relapse?
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Hello, I started relapsing after only 6 months post-SCT (which was last August (2023)). This is my second relapse since being diagnosed three years ago. At that time I was given Dara-RVD and then maintenance until I had my first relapse in March 2023. Will now be moving into CAR-T, changing up my medication as a bridge. Was wondering if there are any folks out there who relapsed early after SCT and what your journey has been like since? I have translocation 4:14, no other mutations. Am admittedly very worried about this.....thank you!
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Fluff
Multiple Myeloma Discussion • April 10, 2024
Kidney Recovery & Induction: What to Expect?
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wondering if anyone here has any experience or insight with regard to kidney recovery during induction? Lambda light chain myeloma was diagnosed after my spouse's blood work showed creatinine levels 10x above normal range. He's just started his second cycle of CyBorD-D and his light chain number is way down, creatinine levels dropped by half but still very high. eGFR is improving but slowly. The nephrologist recommended a wait-and-see approach before starting dialysis. I can't get a clear sense regarding the likelihood and/or extent of kidney recovery
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beigeUrchin
Multiple Myeloma Discussion • April 10, 2024
Managing Painful New Fractures: Kyphoplasty?
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I am in remission (IgA MM) based on bone marrow results after my first 8 month round of Velcade-Darzalex-Dexamethasone-Revlamid. My biggest hurdles have been massive blood clots (saddle & all 5 lobes) in September 2023 for which an emergency thrombectomy was performed and I am now on Xarelto. I also had lumbar fractures & had 3 kyphoplasties in August 2023 which was miraculous & got rid of all of my pain. Now I am riddled with severe pain again with 3 new fractured thoracic vertebrae. It has been suggested to undergo surgery again with kyphoplasty. In looking at the rest of my spine it is riddled with lesions. Does anyone have experience in any alternate procedures that should be reviewed or information on kyphoplasty concerns? I am on Zometa IV monthly & Revlamid 10mg maintenance. I am hoping there is hope & progress for bone lesions.
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NKP64
Multiple Myeloma Discussion • April 9, 2024
Velcade Storage at Home: Any Tips?
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Hello all If anyone is self administering velcade rather than visiting hospitals, please could you advice the storage technique for it? I am a little worried about it as I am not sure whether they should be refrigerated or not? Also it is summer time in India, 35-40 degrees are very common. Many thanks