I don't know how to reply all, but a deep, heartfelt thanks to everyone who replied to my intro message with encouragement and tips! I'm very glad to join this community and will also join the FB group. I'm happy to say that after my first 42 day cycle my numbers went down significantly. I'm doing a clinical trial with isatuximab. I am at Dana Farber and feel like I have a good care team.

Anyone experienced phantom smells with MM? All of a sudden, over the last couple of weeks, I am smelling automobile exhaust all the time. It smells exactly like my classic Mustang with no catalytic converters, but I haven't even started that car in well over a week. My meds haven't changed. I got a brain MRI (both with and without contrast) a couple of weeks ago, and they said it was unremarkable. I even got a PET scan a few weeks back, and they said there was nothing unexpected in it. But I'm smelling car exhaust everywhere I go. Anyone else experienced that?

Has anyone experienced necrosis of the jaw? My husband was diagnosed in Feb 2024 and has had three infusions of Zometa as part of his treatment. He is scheduled for SCT beginning of September and has noticed an area in his jaw where bone is exposed. We are concerned this will delay his transplant. We need some insight as to how necrosis of the jaw is treated. Thanks

A phase III study is open comparing a new drug called mezigdomide (CC-92480), carfilzomib and dexamethasone vs. carfilzomib and dexamethasone. Mezigdomide is part of a new class of drugs called CELMoDs. Study participants who have relapsed or refractory myeloma, at least one prior line of therapy (that included either lenalidomide or 2 cycles of an anti-CD28 monoclonal antibody) are welcome to join. Learn more: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05552976?cid=s_2839274

We invite you to participate in our 3-year study on bispecific antibodies for multiple myeloma! Share your real-world experiences through 8 short surveys over several months. Open to patients 18+ currently on treatment. Your insights matter! For more info, contact HealthTree Patient Navigators at support@healthtree.org Participate here: https://buff.ly/3zFeG23

Hi my name is Mildred and my husband was diagnosed with multiple myeloma cancer on December 2019 and the journey began that same day because of how advanced his cancer was at that particular time. We started chemo the day he was diagnosed and almost seemed like it was right away the Dr started to prepared him for a "bone marrow transplant" 3 months after being in treatment. Unfortunately a week before the transplant he was diagnosed with COVID March 2020 needless to say he was hospitalized at a time in which people nor Drs knew what to do about it but he was in the hospital for 10 days. When he made it home was a race with his treatment and making sure he was eating clean in order to put the bone marrow transplant on the table again and in May 2020 he received it and it went well,he was home in 2 weeks.This treatment was important to us because it could give him 2-3 years when initially he was giving 9-12 months but unfortunately 8 months later the cancer was active again so a combination of different meds was giving to him as well as different blood test and that's when we realized that he is "high risk". resistant to treatment. They tried different meds and 15 months ago He was giving "cart-T cell in a clinical trial that ended a month ago and his team said that they have nothing else for him despite of him developing a secondary cancer (Prostate cancer) but they would see him for blood work every 3 months to track the status of both cancer.

Good evening! In May of this year I was diagnosed with MGUS (with a low Mspike .37) and bone marrow biopsy results being small population of lambda-restricted plasma cells. My hematologist/oncologist said we would repeat blood work again in November. I just had blood work completed because I had to change hematologist/oncologist due to insurance. My results: no monoclonal protein; Beta 2 Globulin % High; Kappa Free Light Chain High; WBC low; RBC low; MCV high; Neutrophils low; Monocytes high; Neutrophil absolute low. All other labs were normal. Can anyone give me insight? Has anyone ever had a positive Mspike and then it be negative even withouth treatment? Any insight would be helpful! Thanks in advance.

Hi im 44 and have finished my induction DVrd 4 rounds. I have 2 kids under 3 and we want another. Life’s good at the moment I have never had any symptoms and I’m MRD -ve. Am I being foolish by postponing my stem cell transplant?

Hello, everyone, I'm stopping in to share my story in hope it might help someone to keep going. My CAR T Cell therapy, CARVYKTI, was in March 2023 and this coming month of September 2024 will be 18 months since I've been chemo free. I have had to receive IVIG immunotherapy every month since but that beats receiving chemo anyday. My note today is to share that I must resume treatment in September. It's back. 8 years fighting back. I am thankful for going on 18 months chemo free and am now researching to decide what treatment I should go on next. There are options, and for this I am also grateful. If possible, please share with me what treatment plan you're on or thinking about if the myeloma relapsed after CAR T cell therapy. It will help me in my decision making. Thank you, all, for listening, and for your help. Truly. Miriam

I HAVE HAD CHRONIC DIARRHEA SINCE CHEMO IN 2017. I CAN FIND NO CURE RECOMMENDED AFTER NUMEROUS CONSULTATIONS AND OUTREACH. ANYBODY ELSE HAVE THIS OR AM I UNIQUE. ART

Anyone here been on Venetoclax now? They are prescribing it for me? Wonder if my insurance will cover it since not FDA approved?