I was diagnosed with SMM in July 2020. Recently it seems I'm getting frequent infections because of my suppressed immunity. I was wondering if this is a common experience among other people in the group?

I have just started my second Oral Treatment with Revlimid & DEX. Will the side effects increase and get worse or will they stay about the same? Curious.

Hi all, Here are some facts about bispecifics and some side effects to be aware of. This is pooled data from multiple clinical trials using bispecifics so it gives us a wider picture of bispecific therapy as a whole versus just a single therapy. Let me know what you think! https://healthtree.org/myeloma/community/articles/infections-bispecific-antibodies-myeloma

My latest bone marrow biopsy was showing minimal disease and my doctor has said I should stay on my treatment regimen of Darzalex faspro and Xgeva infusion once a month and Revlimid 10 mg 14 days on and 14 days off and Dexamethasone five 4 mg pills every7 days. I am interested in a different therapy and want to know more about bispecifics

Hi everyone - MM diagnosed jan.2020 Velcade gave me bad neuropathy still Numb with some pain after a wonderful podiatrist ( whose husband had Lymphoma and neuropathy ) told me quite quickly the pain between the 'knuckles' of the toes at the sole of the foot was not Neuropathy but Capsulitis -- gave me 8 shots of whatever in those muscles and two days later I was moving around with much less pain. After Kyprolis didn't like me either, I had been on Dara/Faspro for over a year - never quite in 'remission' but numbers very low. Have so far avoided the SCT and do not wish to have one unless that's all I'm left with; many factors went in to this difficult decision as SCT is always 'protocol' early on and I'm fit otherwise, so a 'good candidate'. There are so many drugs being developed now that SCT's I think- my non-doctors opinion is - that they will become something for only a few patients. SCT was the wonder drug/procedure of it's time. I signed up for the Teclistimab trial back in April 2022 - and was a bit shocked when they said eleven days in hospital -- that was by far the worst part of it - nothing wrong at all with me except MM and much lack of sleep. Had cytokine release syndrome minimally, which began with pain in lower back - and then shakes all over with small fever - the entire thing lasted maybe 20 mins tops and all fine after shaking stopped, and that was it . Rather a lot of Dex taken, which fell away after a week maybe of leaving hospital. My numbers were plummeting and in June I became MRD negative - they search over a million cells from Bone Marrow sample and could not find a single MM cell. Finally they cut down the amount of injections to once every four weeks; however I picked up a chest infection back in Oct. 22 which I am still dealing with 6 months later, and have chosen reluctantly to come off the trial as Teclistamab seems to lower most patients immune systems and my Bronchitis got a lot worse plus sinusitis this February. The plan is to watch and wait, and if and when MM rears it's ugly head again we will in all likelihood reach for the Teclistamab. It's a wonder drug and I'm very thankful to have been on the trial-- fingers crossed for 2? years plus of MRD negativity. Forgive long post needed to give context. Keep on keeping on you marvellous Myeloma pugilists keep the gloves up as much as you can-- ---. S.

I was diagnosed with MM in December, 2013. Was treated with 6 lines of therapy but relapsed on each without having attained remission. In July of 2020 I entered a clinical trial using immunotherapy (tnb 383b) and amazingly achieved complete remission in a few weeks. During the 2.5 years in the clinical trial I remain in complete remission. I receive an infusion every 3 weeks and the infusion has been side-effect free as far as I can tell. I turn 79 in a few months. This treatment has been a blessing. The bi-specific antibody attacks the BCMA coating on myeloma cell wall by drawing my T cells to the myeloma cells so that my immune system can destroy the myeloma cells while leaving normal cells unscathed. So far so good!

Hello Everyone. I have been SMM since 06/2020. My Doctor is at UT Southwestern and I like her. My numbers seem to be getting worse as my lamba free light chain is at 1689, my protein in a 24 hour specimen is over 400. My plasma is at 30% she to me I was a 20/2/20. I ask here if there was any trials that could help to possible prevent this from becoming active and she keeps telling me no because she said that the meds will make me sick and I might not go active for another 18 months so there is no need to make you fill ill if I don't need to too. I see her every 3 months for blood work and have pet scan every 6 months to make sure no lesions have formed. Should I ask for a second opinion or just let her lead? To be honest this is my third bought with cancer. I have over came kidney cancer and lung cancer. This waiting is killing me. Thank you in advance for your thoughts and advice. Chuck

I have high risk SMM with my plasma at 30%, Lamba Free light chains at 1689 and my light chain ration is .03. My total protein from a 24hour speciman was 600. I have 20/2/20 . I do not have any MM defining issues (CRAB) other than neuropathy. Is CAR-T for people with high risk SMM?

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.