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

HI I need solution for this My Grandfather has diagnosed as AML I think he is in initial stage. I am his grandson we asked many hospitals in our surroundings no is responding and treating him properly and not admitting him. Due to age reasons. He is almost 90 years old. He are suffering a lot. Not having food. Properly and i can't see him like that I am seeking suggestion to extend his life span and ways to do this we are family of poor not rich. we are seeking for support please help to to find solution

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"

I’m Lucy, I’m from Bermuda. Since my diagnosis in June 2024 I have been living in Boston, USA while receiving treatment for AML and recovering from a stem cell transplant. I’m looking forward to returning home once I reach 1 year post-SCT: November 2025. I was diagnosed out of the blue - I tried to donate blood but my hemoglobin was way too low. A couple blood tests later and I got my AML diagnosis and an urgent referral to Dana-Farber Cancer Institute in Boston. I feel lucky to be treated there. I was freaked when I first walked in but immediately felt enveloped in love, safety and expertise. My mutations were NPM1, DNMT3A & GATA2 so I had 7+3+GO induction and two rounds of HIDAC consolidation. MRD was persistent and my oncologist realised my supposedly favourable mutations were behaving like intermediate ones, so I swapped to the stem cell transplant treatment route. I received my new stem cells in November ‘24 from an amazing wonderful unrelated 25yo man. He’s still anonymous to me but I hope we’ll eventually meet. My recovery is going well, just a few niggles with skin and liver enzymes. I’m gradually regaining energy and fitness and staying safe while my immune system rebuilds. Now counting the days til my first re-birthday!

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!

I was diagnosed in Dec. 24 with MDS following Myeloid NGS Pathology Report. This report identified I am positive for ASXL 1 & RUNx1 w/3 genetic variants. High risk per IPSS-M, WHO 5th Edition. I have had a 6 cycle Aranesp 500 mg a 2 wks. with insufficient response due to transfusion requirements. Currently receiving Vidaza 5of 6 cycles in with ongoing need for transfusions. Very concerned that current trt modalities are not sufficient & a likely transition to AML is in my future. That said, I’m interested in all the knowledge re: this potential phase of disease that I might face. Linda

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?