Hi all, I’m Lucy, I was diagnosed with AML last year June ‘24, aged 38. I’m recovering from an allo stem cell transplant last November ‘24. Gratefully I should be cured (unless I relapse). I had to move from Bermuda to Boston, USA for treatment and I expect to be here til Nov when I celebrate my first re-birthday after SCT. My mother moved with me as I’d never want to go through this alone. It was a big adjustment leaving the rest of my family and friends (and cat!) as well as losing my job as my recovery took too long 🙄 I feel like my life is on pause and I forget that everyone else is carrying on as normal. Did others have complete changes in living arrangements or have to move far for treatment? Or relate to other aspects? Also any tips on hair regrowth? My hair has been growing for 6 months and missed the “cute chemo curls” memo - any advice on taming my “mangy rat met electric socket” look is welcomed!

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.

I have soldering myeloma, MDS and siderblasttic anemia along with fibromyalgia. Should I go on hospice. I was first diagnosed over 5 years ago.

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

PLEASE read my blog describing how I got TEN vertebral fractures because my doctor neglected to give me a booster of Xgeva after stopping it. https://healingmyeloma.blogspot.com/ TITLE "Leadership Failure - Ten fractured vertebrae due to a medical oversight"

Hello, How long post Cart T did you wait to travel by air?🤔 I know some of you have had to relocate temporarily. Did you travel by air ? Thanks and happy weekend!

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/

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/

My ratio for kappa Lambda has increased for the last two months. Now is at 2.5. I have been in remission for almost a year. Does this means it is coming back?

I’m on 10mg Revlimid and have developed eye sores. Has anyone else had this side effect?

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

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?