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Qunbin
Multiple Myeloma Discussion • September 13, 2025
Understanding New Upfront AL Treatment Trends
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From Amyloidosis Foundation A recent 15-year analysis from ashpublications.org reveals a significant decline (71%) in autologous stem cell transplantation (ASCT) for AL amyloidosis as Dara-CyBorD (daratumumab, cyclophosphamide, bortezomib, dexamethasone) replaced CyBorD (cyclophosphamide, bortezomib, dexamethasone) as the preferred upfront therapy. The study indicates ASCT is now reserved for patients with relapsed/refractory disease, suboptimal responses to Dara-CyBorD, or high bone marrow plasma cell burden. Key Findings: Shift from ASCT to Dara-CyBorD: . The introduction of Dara-CyBorD led to a substantial decrease in ASCT utilization, with a 71% reduction observed between the CyBorD-dominated era (2010-2019) and the Dara-CyBorD era (2020-2024). Increased Pre-ASCT Therapy: . In the more recent cohort, a higher percentage of patients received pre-ASCT induction therapy, with Dara-CyBorD being the prevalent choice. Improved Response Rates: . Dara-CyBorD demonstrated superior hematologic response rates compared to CyBorD, contributing to its reduced reliance on ASCT as a salvage therapy. ASCT for Refractory/High-Risk Cases: . ASCT is now primarily utilized for patients who don't respond adequately to Dara-CyBorD, patients with relapsed or refractory disease, or those with a "myeloma phenotype" characterized by a high plasma cell burden in the bone marrow. Patient Profile Changes: . The study also noted some changes in the characteristics of patients undergoing ASCT in the later period, including older age and a higher baseline bone marrow plasma cell burden.
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beigeTortoise
Multiple Myeloma Discussion • September 13, 2025
Considering Hospice: When Is It Time?
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I have soldering myeloma, MDS and siderblasttic anemia along with fibromyalgia. Should I go on hospice. I was first diagnosed over 5 years ago.
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mhmadani
Multiple Myeloma Discussion • September 13, 2025
My Hopeful Journey to MRD-Negative Remission
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Hello, my name is Mohamad. In the whirlwind that follows a multiple myeloma diagnosis, it’s easy to feel like you’re defined by numbers: your M-spike, your plasma cell percentage, your risk factors. I was diagnosed at 44 with IgG Kappa Myeloma. My numbers were daunting. But I’m writing this today to tell you that numbers can change. With today’s treatments, they can change dramatically. This is my story of moving from a frightening diagnosis to the profound hope of a deep remission. The Starting Line: A Shock and a Plan My journey began with the classic symptoms—fatigue and bone pain. The diagnosis was a shock, but my care team moved quickly. I learned my disease had some aggressive features at the start, which was scary. But I was also FISH-negative, a point of hope my oncologist clung to. My induction therapy was DARA-VRDC (Daratumumab, Bortezomib, Lenalidomide, Dexamethasone). I won’t sugarcoat it—it was tough. There was fatigue, some neuropathy, and the mental grind of continuous treatment. But we had a goal: to get me to an autologous stem cell transplant (ASCT) in the best possible shape. The Climb: Stem Cell Transplant In April 2025, I underwent my ASCT. Those weeks in and around the hospital are a blur. The high-dose chemo (melphalan) is intense. There were days of profound fatigue, nausea, and a complete loss of appetite. It’s a journey you take one hour at a time, trusting your medical team and leaning on your loved ones. But then, your cells come back. Your counts begin to recover. And you start to feel human again. It’s a powerful feeling of resilience. The Summit: Day 100 Results The Day 100 tests are a monumental milestone. It’s the first major look at what the transplant truly achieved. I waited for those results with more anxiety than I’d felt in months. And then, the news came: · M-protein: Undetectable on serum immunofixation. · Bone Marrow Biopsy: 0% plasma cells. · MRD by Flow Cytometry: Negative at a sensitivity of <0.00056% (that’s less than 1 in a million cells!). I had achieved a complete response, confirmed by MRD negativity. The emotional weight that lifted is impossible to describe. The tears were of relief and joy. The numbers that once defined my disease were now proof of its defeat. The New Path: Maintenance and Life The journey isn’t over. I now am on maintenance therapy with monthly subcutaneous Daratumumab and daily Lenalidomide. This is our long-term strategy to keep any residual cells in check. Life on maintenance has a new rhythm. I manage side effects like mild fatigue and a compromised immune system. I’ve learned to be vigilant about infections, to rest when I need to, and to celebrate the energy I do have. I’ve also had to learn about nutrition to manage the weight gain from steroids—a common challenge many of us face! A Message of Hope I share this not to boast, but to show what is possible. To the person newly diagnosed, terrified by the numbers on their lab report: please know that those numbers are a starting point, not your destiny. To the person undergoing induction or staring down the prospect of a transplant: you are stronger than you know. Take it one day at a time. The support of family, friends, and this incredible community is your fuel. And to those on maintenance: let’s walk this path together. It’s a marathon, not a sprint, but it’s a marathon we are equipped to run. The landscape of myeloma treatment is brighter than ever. Deep remissions are an achievable goal. Never, ever give up hope. In solidarity and hope for a cure! Mohamad
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kenlevy
Multiple Myeloma Discussion • September 11, 2025
Financial Assistance Grant Now Open
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Please note that the Multiple Myeloma Health Equity Fund with the Patient Advocate Fund is now open. Grants up to $7,500 for those who qualify. Please check this out at your earliest convenience as the fund runs out quickly. The link is: https://copays.org/funds/
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kenlevy
Multiple Myeloma Discussion • September 11, 2025
PAF Financial Assistance Fund Now Open
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Please note that the Multiple Myeloma Health Equity Fund with the Patient Advocate Fund is now open. Grants up to $7,500 for those who qualify. Please check this out at your earliest convenience as the fund runs out quickly. The link is: https://copays.org/funds/
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rudiflik
Multiple Myeloma Discussion • September 10, 2025
Coping With TALVEY Taste Loss & Dry Mouth?
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Hello I finished my 10 Day step up procedure required if you are prescribed TALVEY. 8 days in the hospital ok, on the ninth day dry mouth and no taste. It has been 3 month now. I am miserable and very disappointed. Any thoughts? Thanks
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prettyorchard
Multiple Myeloma Discussion • September 10, 2025
Considering CAR-T: What Is the Experience Like?
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Have been on Pomalyst for 5 years, since remission. My light chains are going up. MM specialist is recommending Car T-cell therapy. I am 78 years old. The odds sound good, but how bad is it to go through?
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XimenaG • Admin
Multiple Myeloma Discussion • September 9, 2025
Share a Name for Our Tree of Hope
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🩸 This Blood Cancer Awareness Month, we’re building a Tree of Hope, and every name matters. Comment your name or the name of someone you’d like to honor, and together we’ll create a tree filled with strength, courage, and love. Together We Care. Together We Cure.
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BarbaraLove23
Multiple Myeloma Discussion • September 9, 2025
Struggling to Raise Counts After Chemo?
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My husband had chemotherapy five days 24 hours. He's now having problems getting his blood count up and platelets up have anyone else experienced this
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anaGazana
Multiple Myeloma Discussion • September 9, 2025
Experiencing New Hives on Kyprolis & Dara?
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I have been receiving Kyprolis infusions on day 1 and day 15, and a Dara Faspro injection on day 15 of treatment for the past three and a half years. On Thursday of last week I received both Kyprolis and Dara. Three days after the treatment I woke up with a severe case of hives. This has not happened previously. I do take Claritin the day before, day of, and day after treatment and 4 mg. of Dex the day of treatment. Has anyone experienced this?