Hello, and thank you to whomever for creating this platform. I have what I consider refractory IGG multiple myeloma. I was responsive to vRD but non responsive to autologous SCT. I tried to join the EXCALIBURR trial (for any who is non responsive or have progressed disease post SCT I suggest you look into it a-sap). I however could not participate because you must have all your initial screenings complete within 120 days post transplant :( I was 129 at my first trial appointment and no one knew. I am reaching out to ask if any of you know of any cutting edge research / clinical trials I might be able to participate in outside of the standard of care. I start low dose Revlimid and Darzalex tomorrow but am hoping to try something else that could help me achieve Complete Remission (not just maintain a VGPR). Thank you in advance!

I have been on treatment for four months for MM and next they want to do stem cell transplant. I recently was in the hospital for pneumonia and had a bad experience being hospitalized. IT's making me question the stem cell transplant and all the time needed in the hospital. Plus I dont think doctors are being truthful about the recovery process and how long it will take to feel bad to normal. Is SCT worth it? Seems like the MM comes back either way. Thanks for any insights.

Hi, I'm new to this page but I have multiple myeloma and have been in remission for 11 year's. I read the patient story about John and Ann Bailey and would like to connect with them. Any suggestions on how I can do that? Sincerely, Barbara Mauro

Hello, after 8 months of my SCT my MRI shows a new ill , Dr suggested Car-T but I want to get a different treatment, anyone relapse a short time after SCT , and what treatment they received. Thank you

Hi, I have MM 9 1/2 years. Been through tandem stem cell transplants, usual drugs, car-t, Teclistamab and Tequalamab. And recently relapsed. Anyone in the same boat and what treatment are you getting. Is it working? John

Prior to diagnosis (one year ago in 1 week!) I was lifting heavy, had even gained 10 pounds of muscle in the year before diagnosis. SCT was 3 months ago. I am walking daily with a weighted vest, but now have this very round belly that I would like to get rid of, and get myself back into shape. When I was lifting, between sets I would jump rope. Several sites recommend staying away from jumping rope because of the impact, but I think with proper form it's very low-impact. Anyone else here jumping rope? It's such an efficient exercise, I'd love to get back into it.

Hi everyone! I hope you all are well. This year, HealthTree Foundation is expanding our efforts to support CMML patients through education, community-building, and patient-driven research. As we develop these programs, it’s essential that we incorporate the patient voice every step of the way. I’d love the opportunity to connect with you for a 30-minute video call in the next week or two to hear more about you and your experience with CMML. Your insights will play a crucial role in shaping our programs to truly reflect the needs and priorities of CMML patients. Please let me know if you would be open to this, and we can find a time that works for your schedule. I truly value each of your perspectives and would be honored to have the chance to learn from you. Hope to hear from you! Katie Braswell Director of Patient Education at HealthTree Foundation

Anybody struggling with regaining weight/muscle, after ASCT/Treatments? I met with a dietitian who recommended increase in calory intake to 3300 to 3500 per day...still not working. I'm 54 yrs old and active full court indoor basketball 2 days a week, 45 solid minutes ...cardio is decent...

Hello, Writing on behalf of a family member that has multiple myeloma and ONJ. They developed osteonecrosis of the jaw (ONJ) as a side effect of denosumab. The doctor recommends surgery and restoration. It sounds like the ONJ is late stage. Has anyone had experience with this?🙏🏼

Good Morning! I have a question relating to diarrhea caused by Revlimid (Lenalidomide). After taking Revlimid as maintenance for 5 years I ceased taking it 6 months ago. I still have ongoing issues with diarrhea and still taking Cholestyramine for Bile Acid Malabsorption -with good effect. Has anyone else had issues with ongoing diarrhea after ceasing Revlimid? I am not taking any other drugs atm.

I have MDS and I need transfusion