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.

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

I have been suffering from knee pain since about 3 years. Initially there was lot of swelling in the knee and the doctor removed some fluid to loosen the knee. I have been doing yoga and biking to strengthen the thighs and calf muscles ever since, have been successful to avoid any major recurrence of swelling and its now reduced by about 90%. My doctor recommended to have a physical therapy to work on the remaining issue. Any recommendations for a good physical therapist in the San Francisco bay area? I live in the city of Fremont in the east bay. Thanks in advance 🙏

Good evening! I recently completed four cycles of DVRd after being diagnosed with MM presenting with slight anemia, but no other CRAB criteria. I have achieved MRD negativity in my blood, and other numbers such at B2M, MSpike, FLC, etc. seem to be returning to normal. I’m awaiting the results of the ClonoSeq on my bone marrow. However, my BM biopsy results still report plasma cell neoplasm. Is it possible for the ClonoSeq to return MRD negativity with the bone marrow biopsy exam still showing this? I’m wondering if those MM cells are still in the process of dying off. Thank you!

Healthwell Foundation (healthwellfoundation.org) has a $2000 grant available for Cancer Home Care if you need assistance at home. You must be 500% of Federal poverty level income to qualify.

People forget to call 211 to find local resources that may be available. Also don't forget financial resources that are available from some church organizations. Denomination ie not taken into consideration. Catholic Charities is one. Contact the local office near you. LLS has their Urgent financial assistance open as well.