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

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.

I was diagnosed in 2021, had five months of induction then ASCT in November 2021. Since the ASCT, I have been on maintenance of Velcade for about 4 months, then transitioned to Ninlaro. My immunoglobulin levels have never in all that time gotten back up to a normal range. My oncologist has discouraged me from getting IVIG because I haven't had any infections but part of the reason I haven't had infections is I always wear a mask when around other people and don't go out much. Anyone else have experience with IVIG and under what circumstances did you get it?

My monthly bloodwork continues to show my light chain increasing. When I ask my Oncologist should we do something her response is we just watch it! That’s driving me nuts! I had a Stem Cell Transplant in May 2022 and have been on maintenance Lenalidomide 2.5. Has this happened to you and how long did you sit back and watch?

Hi! I'm was diagnose with smoldering Myeloma on November 2024. I have pains in my back and legs. I'm also experiencing vertigo, I have lost balance and feel nauseous must of the time. I feel like I am walking in a tunnel. When this symptoms are really bad I feel confused. I would like to kow if other people have the same experience. Also, since I have been recently diagnose with smoldering Myeloma in the low to medium risk group, have many of you with the same diagnose, been with out treatment ando for haw many years.

I'm currently on a 2.5 year drug holiday, and I'm trying to plan ahead for the event of my relapse and I'm considering Venetoclex as a possible drug, possibly in combination with Kyprolis. I took Venetoclex for a short time along with Darselex Faspro and I lost my sense of taste. That was 4.4 years ago, and I don't know which drug was the culprit. But finally, my taste is showing signs of recovery. My question is whether anyone here has concluded that either Darselex or Venetoclex, or in combination, has caused taste problems as a side effect? Many thanks, and I wish everyone battling this disease the best of luck.