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Divya
Multiple Myeloma Discussion • June 26, 2024
Sharing Our SMM to Transplant Journey
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My daughter diagnosed SMM in March 2023with 25% plasma cell in BM and it is IgA kappa with light chain ratio 48%. No symptoms were there up to observation of 6 month except ostopenia. Doctor decided BMT and it done in February 2024. After BMT she is on maintenance therapy till date. M spike not detected now since BMT otherwise before treatment it was 4.5. Now my daughter feels healthy.
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Vencar
Multiple Myeloma Discussion • June 26, 2024
Our Journey to MRD-Negative and No Meds
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Yes, a positive share group... this is worthwhile to ignite the flames of hope not be diminished... hey, if it works for someone else, I can hope too!!! I am only a caregiver for my wife but trust me when I say that MM is not only tough for the patient but for those close as well. Our journey started on mid-2021 but months before had LOTS of dizzy & fainting spells, June diagnosed & verified by bone marrow biopsy July 2021. Followed by 4 cycles of RVD immunotherapy and Melphalan/SCT Dec 2021. This period was mentally & emotionally tough as you grapple with your emotions & the serious & fatal nature of MM, so intense fact finding & research followed plus Eureka moments discovering the many support groups and organizations such as this not only explaining the technical/medical jargon but mainly enlightened by actual shared stories/experiences thru various stages of progression (both failures & successes). Glimmers of hope are kindled as you scroll thru a multitude of cases with the common conclusion that MM is not a regimented procedural certainty but highly individualistic! Each case is the same yet different. It works for others, it doesn't for others but hey, new methods are continually cropping up and new trials opening up... message being Don't Give Up!!! Luckily for us, after a year of Revlimid maintenance, remission &MRD negative with zero maintenance attained on March 2023.... where we've been since then, living life normally with no meds!!! A fairy tale ending which unfortunately we know won't last when reality strikes and it relapses... when, we don't know and what next is unsure but choices and options are there to select from and we'll address that when the time comes. Hopefully there might be some new warriors at their early stage who read this and hope that they too, get a fairy tale ending too. God bless us all🙏
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Jack Buoscio
Multiple Myeloma Discussion • June 26, 2024
How My MM Diagnosis Saved My Life
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Getting MM literally saved my life! Let me explain: I was diagnosed in Feb. 2018 and didn't need treatment right away. Then in Jan 2020 I was told I needed spine surgery (unrelated to MM). I had that and then had two Stem Cell Transplants-May 2020 and then in Sept. 2020. Both were 15 days each in isolation because of covid. I've been in remission since then and I believe it's because we went aggressively at it with the tandem transplants. I do a monthly maintenance regimen with Velcade and Solumedrol and also take Revlimid 3 days per week. I have a very positive attitude and I make treatment day one that I look forward to-because it's keeping me alive! My spine surgery was the result of the MM original diagnosis - I started doing MRI's, PET scans and Bone scans every six months and they found a benign tumor in my spinal canal and it had tripled in size between June 2018 and Dec. 2019. It was intertwined with spinal nerves and was blocking 90% of the flow of spinal fluid. In fact, when I first met the neurosurgeon at the pre-surgery appt., he was amazed I still had full movement of my arms and legs and said I was very lucky I hadn't had a massive stroke or full paralysis from the tumor because it was blocking so much fluid flow. Surgery was removing 5 inches of my spine to get the tumor out, and then putting in plates and screws to fix. I feel back to normal now but getting MM saved my life! I would have been dead from a massive stroke or would be paralyzed if not for the MRI's, Pet Scans, body scans, etc. that all found the tumor. My belief is to find the positive in your situation-whatever it is. We're still ALIVE and we have options that many do not have!
Thumbnail for Real-World Schedule De-escalation of Teclistamab in Patients with RRMM | Carlyn Tan, MD | EHA 2024
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Real-World Schedule De-escalation of Teclistamab in Patients with RRMM | Carlyn Tan, MD | EHA 2024

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TimJohnson
Multiple Myeloma Discussion • June 25, 2024
Managing Low Protein Levels: Your Tips?
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I'm halfway through my third cycle of DRVd induction and my IgG has dropped over 80%, light chains have almost equalized and are within the normal range. The specialist is even using the term "partial remission." Which is all good and encouraging. My weekly blood draw now shows my overall protein levels are below normal and the local oncologist is recommending boosting plant-based protein intake. I munch partially-salted mixed nuts in the morning to stymie the Rev nausea and have Greek yogurt on my breakfast kibbles instead of milk. What are other good sources of protein or supplements? I want to up my protein, not bulk out with muscle or fat gain.
Thumbnail for Phase 1b-2 Dose Escalation Study Sonrotoclax + Dexamethasone | Binod Dhakal, MD | EHA 2024
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Phase 1b-2 Dose Escalation Study Sonrotoclax + Dexamethasone | Binod Dhakal, MD | EHA 2024

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Thumbnail for CARTITUDE-4 Subgroup Analysis of Functional High-Risk Patients | Luciano Costa, MD | EHA 2024
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CARTITUDE-4 Subgroup Analysis of Functional High-Risk Patients | Luciano Costa, MD | EHA 2024

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Thumbnail for Mezigdomide, Tazemetostat, and Dex in RRMM: Results from CA057-003 Trial | Luciano Costa, MD | EHA 2024
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Mezigdomide, Tazemetostat, and Dex in RRMM: Results from CA057-003 Trial | Luciano Costa, MD | EHA 2024

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Thumbnail for MAJESTIC-1 Study - A Subgroup Analysis of High-risk Patients | Luciano Costa, MD | EHA2024
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MAJESTIC-1 Study - A Subgroup Analysis of High-risk Patients | Luciano Costa, MD | EHA2024

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Thumbnail for The Role of Combination FDG PET Plus Whole Body MRI for Staging  | Claudio Cerchione, MD | EHA 2024
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The Role of Combination FDG PET Plus Whole Body MRI for Staging | Claudio Cerchione, MD | EHA 2024

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blueBadger
Multiple Myeloma Discussion • June 23, 2024
Sharing My Experience With Black Seed Oil
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I am in complete remission from mm for a few years now after going through different regimes and a failed transplant. Now I have no maintence Revlimid or Dex as it was very hard on me. About a year into my journey I read an article about a lady in Tuscany with smouldering mm who was having great results when adding black seeds to her diet. Her numbers got so much better. I started with sprinkling the seeds in my food until I read that the Black Seed Oil Or Black Cumin Seed Oil is more effective than the seeds. I started taking a wee bit as it can upset your stomach. I now take 1/2 tsp twice a week to this day and will continue to do so. It enhances your medication. It helps it to be most effective. My numbers improved greatly with it. I wouldn’t be without it. That’s my story. I’m just telling you what helped me so very much along with my medication and treatment. Hope this helps someone.
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llogue82
Multiple Myeloma Discussion • June 22, 2024
Sharing My Successful Stem Cell Harvest
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Got to 4.6 million for my stem cell harvest and store. Took 3 days and by last day I seemed to be reacting more to the meds they give you to help release the stem cells. Fluid retention and fatigue. My Dr said that was good. Line came out yesterday and so glad to be back home. Good to know they are there if I need them
Thumbnail for Bispecific Antibodies and Precision Medicine Insights on Myeloma Prognosis | Ola Landgren, MD | EHA 2024
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Bispecific Antibodies and Precision Medicine Insights on Myeloma Prognosis | Ola Landgren, MD | EHA 2024

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Thumbnail for Integrating BCMA-Targeted Therapies into Challenging Myeloma Cases | Rakesh Popat, PhD | EHA 2024
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Integrating BCMA-Targeted Therapies into Challenging Myeloma Cases | Rakesh Popat, PhD | EHA 2024

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Thumbnail for LINVOSELTAMAB in Patients with Relapsed/Refractory Myeloma | Suzanne Lentzsch MD, PhD | EHA 2024
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LINVOSELTAMAB in Patients with Relapsed/Refractory Myeloma | Suzanne Lentzsch MD, PhD | EHA 2024

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Thumbnail for ASCO/EHA 2024 Myeloma Highlights - IMROZ, DREAMM-7, DREAMM-8 | Joshua Richter, MD | EHA 2024
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ASCO/EHA 2024 Myeloma Highlights - IMROZ, DREAMM-7, DREAMM-8 | Joshua Richter, MD | EHA 2024

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