I have been on Revlimid and Dex since 2019 and am sick of the side effects . Have gone off Revlimid this month but still take 7mg Dex. My haematologist is hesitant to try anything else as he says I am still coping. Waiting for next blood work and appoint with Dr. I also have osteo orisis so have lots of pain with crushed fractures in back.

I'm being offered Car T or Bispecifics and there is more information available for Car T so I am interested to 1. learn more about Bispecifics - side effects and duration of response, etc. and 2. How Bispecifics compare to Car T. Any information appreciated. Thanks!

I would love to open the discussion in this targeted group. I joined a Phase 1 trial for Teclistimab and have been on this treatment for three years as of last week. It has been extraordinarily effective at keeping my multi-refractory myeloma at bay. I am happy to talk to anyone who has questions about it!

What was the most significant side effect of CAR T for you?

Diagonosed in Jan. 2020 and then the 4 drug regiment. No SCT but I have been on Revlimid 15mg for over two years and have some problems with energy and concentration. Dr. prescribed Methylphenidate(Ritalin) and it has helped in both areas. Best of luck!

I wanted to reach out to the group and see who else may be struggling with "Chemo Brain" and what things you have done to help keep your life organized. I am finding that between work and personal life I have a hard time recalling information and keeping on top of tasks. With work I can attend a meeting and take my notes but my previous system does not work for me like it has in the past. I am on calls ALL Day with meeting after meeting and when asked for a status on something without time to prep, I can't remember the details of a call early in the day and my quick recall can be difficult. I am curious on how others that face Chemo Brain helped keep organized when going back to work and managing tasks at home to not let them slip. Thank you

I'm Marsha. My husband was diagnosed with MM (Light Chain K/L) in October, 2020. As if having a raging pandemic roaring through the world wasn't enough of a challenge, this came into focus. He'd felt tired and achy all summer, but his PCP didn't notice anything was wrong until during an EKG (prescribed by my husband's cardiologist), the technician was shocked by the discovery of a softball-sized bruise on my husband's chest. That led to further investigation, and a CAT-scan revealed irregular bone masses, and a fracture in his sternum. The next thing we knew, we were in the oncologist's office, and after more testing (blood labs, PET scan, biopsy), the diagnosis came quickly, and he's been in treatment ever since. He was 83 when this all started; he's 86 now. His age was a determinant in not advising SCT for treatment. He took Velcade/Dex/Cytoxan bi-weekly for the first year of treatment. His labs improved significantly at 8 months, so our oncologist removed the Dexamethasone from the plan. At 14 months, he was in remission, so the doctor took Cytoxan out of the mix, too. Within months after the end of a full year in remission, the oncologist swapped out Velcade for a 10mg daily dose of Revlimid (actually the generic, lenalidomide), which seems to be working well. I've had to shoulder the bulk of activity around the house and with our finances since this all began. Because there is a double-whammy of age-related cognitive decline and "chemo brain," I need to be present at all his medical appointments, and pay close attention to what he's doing, especially where his meds are concerned. It's a process, and I learn as I go.

I am 67 days post SCT and looking for the COVID primary series but having difficulty. The pharmacist I talked to said they were phasing out the original vaccine as the primary series and are moving to using the bivalent vaccine as the primary series of vaccine. Has anyone done this? If so, what is the time between doses? Is it the same as the original: three doses at least 1 month apart and then the last dose two months after those doses.

I began treatments July 2021 And have gone through several. I'm currently on DAX Moving from every week , to 2 weeks, now Coming up to once a month. I know you move to different treatments when one stops. I don't plan on continuing treatments When this 1 no longer works. My specialist says if I stop treatments he will no longer see me. QUESTION: Has anyone Heard of this? My oncologist Whom I take treatments from says he'll still see me. I'm just tired of the treatments. And excited to see what God Will do. Either way I win. If God takes me home to be with Him or if I stay. I'm just tired of putting this stuff in my body. And it's side effects. Even though this treatment doesn't seem as bad as others. Thank you all

Hi everyone! I am new here and live in the United Kingdom (London). I was first diagnosed with multiple myeloma in 2016, went into remission after chemotherapy and transplant but now relapsed and back to chemotherapy again. Unfortunately, this is not working well for me now as my very low platelets blood 🩸 is disturbing the process. As at now my platelets count is below 30 and my consultant does not want to continue the chemotherapy when is below 24. The normal platelets count of a normal human being is supposed to be: 1500-4500. You can see that this number of mine is with great concern. Traditionally, I have a history of low platelets. To cloth during bleeding is just not there and I fear this could even send blood to my brain and have stroke. Platelets transfusion was done ones but only pushed it up by 13 points and went back low the next week. Can any one help me?

Has anyone had a hip replacement? Did you ask for a ClonoSEQ test be performed on the hip joint that was removed? Any advice or suggestions regarding the pre and post surgery, recuperation?Coordination of maintenance treatment and taking Xgeva? Thanks!

Hi everyone, I am new here and about to start RVD. I would like to know if you take Revlimid in the morning or at night and does the time of day matter?

A bit confused. Recently went through CAR-T, with no response. It did not work. It seemed like a perfect solution. I am Extramedullary, and NonSecretory. My numbers were stable and low. After CAR-T my kidney numbers started to drop. PET CT, MRI showed plasmacytomas surrounding both kidneys and Adrenal glands. 2 a day radiation for 4 days helped this issue. In the mean time my Myeloma numbers started to climb. After some recovery from radiation I am on Elotuzumab, Pomalidomide and Dex. I have no idea if i am still Nonsecretory, just trying to get in a better place. Anyone else have similar characteristics.

Fred Hutch wants to know if they should keep storing my stem cells or if they should be moved elsewhere or discarded. I don’t suppose they’re still viable after nearly 19 years in the freezer. But I’m wondering if they would be of any use for research or anything. Any thoughts?

The HealthTree Moves Columbus 5K and 1 mile event is open for registration. This will be a virtual and an in person event so don't let distance discourage you from registering. Click on the link below for more information. Feel free to PM me if you have any questions or concerns Also, please send me an email if you would like to volunteer for the event. michelle@healthtree.org https://www.facebook.com/events/1274031416532390/?acontext=%7B%22event_action_history%22%3A[%7B%22mechanism%22%3A%22your_upcoming_events_unit%22%2C%22surface%22%3A%22bookmark%22%7D]%2C%22ref_notif_type%22%3Anull%7D