Hello! I am searching for people who have been in clinical trials for High Risk Smouldering Myeloma using Iberdomide as treatment. I am debating on being in a Phase II Iberdomide study that lasts two years. Presently I feel pretty well and am living a active life so I am apprehensive on giving that up. Is there anyone out there that is taking Iberdomide for high risk smouldering myeloma?

Hello all, I am in my 4th year dealing with MM and now at age 84. After having been on four previous medications ( Velcade, Kyprolis, Daratumumab and Selinexor, all with the usual Dex and Lenalidomide or Pomalyst.)all which kept my MM in check. 8 weeks ago needed a change as these meds became resistant to treatment and did not allow me to reach remission. I am now on weekly injections of Elfrexio a BCMA-directed bispecific antibody drug. My labs have improved significantly. Could anyone share with me their side effects? I am terribly fatigued most of the day but more disappointing is the frequent Tachycardia when exercising forcing me to stop when my pulse exceeds 105. This is usually accompanied with a low systolic pressure, high diastolic pressure and of course the high pulse which many times exceeds my systolic pressure. It makes me totally useless. Any thoughts? Thank you Rudi

Today is #WorldCancerDay I thought I would share this well done video on how myeloma develops. Dr. Morie Gertz of Mayo Clinic make this concept very understandable. https://youtu.be/cU5vwNLAuBU?si=NOCQL3CJzjSe7Dv6

Good day all. Just wondering; does anyone else have problems in the morning? I can't wake up. I feel dizzy and disoriented in the morning. My BP was averaging 105/58 upon waking. Dr. took me off of Verapamil. This morning was 118/65 and I still feel sick when I wake up. I take 10mg. of Revlimid with my evening meal. I am wondering if I should switch to earlier in the day. If you are on Revlimid when do you take it? Also on monthly Darzalex and IVIG transfusion monthly. ASC was May 28 of 2024.

My father is 69 and was diagnosed Jnauary 2024 with 1Q gain. Induction therapy started with VRD for 5 cycles till velcade withdrawn due to PN. SPEP came down to 0.6 from 2.65. Maintenance started with RD till bone pain started and when SPEP measured was found to be 1.2 Doctor brings back velcade and replaced Lenalidomide with Pomalidomide 2mg. Cycle timings dint coincide and as bone pain was persisting, SPEP and PET scan was conducted after 2 cycles of velcade and 1 cycle of Pomalidomide. SPEP is 1.3, and PET has new lesion and impression being progressive disease. Doctor says refractory to both immunomodulatory and bortezomib but I thought differently about Pomalidomide because it was relatively short time to conclude so of Pomalidomide. What do I do, confused really.

My father has 1q gain and has relapsed after VRD for 5 months and maintenance of 6 months with RD. It would be useful to learn from anyone here in the community with 1q gain and their journey. The doctor is slightly pessimistic when he is consulted. So feeling a little concerned.

Has anyone had an enlarged spleen while in remission on maintenance ReVilimd? I had a stem cell transplant 2 years 9 months ago.

Hi All- I'm Gwen Aberer from Danville California, east of San Francisco. I am a Multiple Myeloma patient and look forward to learning more about how we can support our immune systems through nutrition and exercise.

Watch and wait or treat now for Smoldering MM? Hi I’m 67 almost 68 female diagnosed with high risk SMM and made the decision to fight off this disease. I have a wonderful oncologist and his team working to do everything for me in this fight. Previously started on Revlimid but had side effects that my Oncologist suggested we switch to Darvalex infusions recently approved for this treatment which he said I may tolerate better. I had extremely itchy scalp, fatigue, constipation and a scary episode of Afib. Anyone here have thoughts on the wait n watch vs treat now? I feel fortunate that this had been found early enough for me to have an option and going forward live my life as long as possible! My parents both lived to 89 and have always thought I’d have a good long life also. Remaining positive! 🙏

Hi everyone. I am 8 weeks post stem cell transplant and feel great. Because they gave me Melphalan, I lost my hair. My question is when does your hair usually begin to grow back post transplant? This has been one of the hardest parts of the journey for me. I am very thankful that I physically feel as good as I do so soon, and almost feel guilty that I am struggling with this. But thank you in advance for any input about your own personal experience with this. God Bless.

Hello, has anyone opted out of doing a stem cell transplant? I was on a clinical trial for my induction therapy, and I am now done with that. Now my doctors are saying up next is talking about the option of doing a stem cell transplant. I’m considering just harvesting my stem cells right now. I did really well during my induction therapy treatment with little to no side effects. I am 32 years old with 1 high risk factor. Please share if you decided to OPT out of doing a stem cell transplant. Thanks. 🙂

I have IVIG once a month after my Talvey injection. I have intermittent diarrhea, but I think it's because I have had three stem cell transplants, and my digestion intestines are stripped. I usually sleep during my infusion because of the pre-meds given to me before my Talvey I have only been sick once since last year so I think it is helping.

Good day: Is anyone else on IVIG transfusions? I received mine yesterday. I had violent diarrhea, nausea, chills, no fever, tried to vomit several times, but I have surgery for reflux so can't vomit. Last month I broke out in a rash after receiving the transfusion. Just wondering if this is normal. This is my 5th transfusion. First three went off without any problems or side-effects.