I was diagnosed with myeloma in 2023 M Proteins was very high.I have very painful lower back pain . At times the whole back. It makes it difficult to sit, walk, stand, or lay down. Travelling short distances has become a challenge for me ,be by car or walking . Has anyone had this problem I was on Bortezomib injection and Diametheson. This was in 2023 to February 2024 with one week off intervals. The MProteins dropped quite significantly. In January 2025 went for my routine check up, the M Protein's started rising up again. I was put on Linalidomide and Diametheson . The M Protein is dropping but at a slower pace . Has anyone has this problem? I do some walking around the house the property is big, and I do household work which does not cause me to bend or lift heavy objects. I can't post my results for now as I will have to compile all of them later.

Hi, In May 2021 I was told I have SMM. In Nov 2023 started on Darzalex, IVIG nothing out of the usual and outside of minor stomach distress was doing fine. In Mar 2025 my platelets dropped and even with the normal course of drugs have not improved. Currently my platelet counts are averaging around 15,000 when I receive platelet transfusions. Next week I’m scheduled for radiation on a spot on my back. Outside of being tired all the time I have no bone pain. I’m a semi-healthy 81 year old male. Seeing little mention on this forum my question is this something that other people have experienced?

Everyone need to be aware of and read the annual changes to your Medicare plan which you will be receiving soon if you haven't already received. There are many changes this year including premium, copay, deductibles and max out of pocket increases as well as changes to covered providers. Many PPO plans are being dropped as well. Make sure you have the coverage you need. I will be hosting an open Q and A on the 1st Tuesday in October right before open enrollment begins to help you navigate this season.

Hello I am 11 months post SCT After about 4 mos of 5mg daily lenalidomide (Revlimid) maintenance I developed a rash. It started as looking like a heat rash around my waist and developed into a whole body rash, looking like textured reddened skin. It itches a lot, especially if I’m hot. My docs took me off of maintenance for several weeks and gave me a prednisone pack which helped greatly. The rash returned but at a turned down level. I am now back to taking Rev every other day and using prescription lotion. It does seem a bit worse since being back on the Rev. At this point my docs are taking a wait and see approach. I know this is a common side effect. Does anyone have any insights or experiences to share. Other than this challenge things are going well for me and I am back to my normal activities Thank you !

Targeted treatment are a potential treatment option for multiple myeloma. Join a clinical trial to advance research on targeted treatment, and make a difference in the lives of people with multiple myeloma.  For more details about Pfizer’s MagnetisMM clinical trials, please visit: https://www.pfizerclinicaltrials.com/MagnetisMMClinicalTrials

Well I am thinking I’m headed to a relapse. I got my bloodwork results today and my kappa is 21.4 and my ratio is in the 2 range. My ratio has been a little elevated for three months but went down in August. In July my bmb was good. less than 1%. Is there any reason besides a relapse that my numbers could be off?

Hi all. I am currently on treatment of Isa KD Isatuximab, Carfilzomib and Dex, only got 2 1/2 years of remission after SCT. I’m doing ok with the treatment every week at first now 3 weeks on and one week off. I’m on my Third round, I’ve had some vomiting the night of the treatment, so now I take a ondansetron the day of. But I’m getting night sweats and hot flushes most nights? I’m 59 years old and on HRT have been for 8 years so it’s not menopause? The night sweats started coming back, when my numbers started rising, which I think is normal, but my numbers are back to normal now, so I expected this to stop? Has anyone else had this experience? My worry is that it could be a secondary cancer? Nights sweats are a symptom of cancer.

I need help! Lots of help! I got my first cancer from 911, I worked for the federal gov. I didn't know, and also I was scared to death, by the time they found it it was a stage 4!!! Just like Farrah Faccett,and she died, I just kept suffering. Let me tell you, as my life started very hard, I was unwanted. And my nerves were a wreck! After the first cancer, than a heart attack also from 911, and Let's not for get the myltuipy myloma, which seems to come and go???? I don't believe they want to treat me because of my age,, I can't walk well enough to work my brain is mixed up, I keep going to drs. Who know less than I do, like no one care. Tomorrow, I want my mbloodmdrawn imwant to dpsee if it is getting better, worse or just staying the same. One dr. Ind, wants to put me on medicine, the dr, in Tampa say no need for treatment yet, keep,watching, but they found it in my bone morrowm2x and tell me it don't go away . So can I say I was dignised on2018 and now it's 2026,that is 8 years, how can it vibe in your bones, and than one day, it's just going to explode like it did to,my friend and my doctor,mthry had there lastm6 months in Hell. Please,I need help,with all this, what can I do I can't walk it hurts so much and I need a job .

My mom was just diagnosed yesterday with IgG Lambda Multiple Myeloma with high-risk cytogenetics (del17p – 7%, gain 1q – 6%) from a oncologist/hematologist. We want to start induction treatment ASAP, but the soonest myeloma specialist appointment is late November. The oncologist (not a specialist) has recommended quadruplet Dara-VRd as induction therapy. My questions for the group: - How critical is it to see a myeloma specialist before starting induction therapy? - Has anyone compared Dara-VRd vs Dara-KRd, especially for high-risk patients? - Are there any other induction therapy options we should consider before moving forward? I really would appreciate any help as I am freshly new to navigating all of this. Thank you all so much!

Have anyone that taken Chemo with low platelet and red blood cells tried the papaya extract leaves if so did it work to bring them back up

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/