So, dealing with dehydration. Bloodwork says my kidneys are still okay. Question: doc says take electrolytes daily to counter the dehydration. All I can find that I can tolerate is something for kids called KinderLyte. It has dextrose, though apparently not as much as it tastes like it has. But, aren't we not supposed to take in sugar because it feeds cancer? Have you all completely cut sugar out? I largely have until this. (I know some of the other electrolyte drinks use fake sugars, but I can't tolerate the sugar substitutes.) I feel like I have to decide between risking more cancer or getting so badly dehydrated that I end up in crisis and even possibly damage my kidneys. Any help?

Opening up for discussion sharing thoughts on diets, dietary changes or specific foods people have found helpful for side effects or that they feel are attributable to long term progress free Myeloma? My husband, diagnosed July '22, started Vegan, whole food, plant based diet. He has had terrific relief from the neuropathy in his feet that was presumably result of the Melphalan given during ASCT. He has been starting his day juicing celery before eating anything. When he doesn't juice for a few days we usually see a spike in his bilirubin. Correlation or coincidence? Not sure, but we are going to continue just in case. Also, started yoga, strength training and Peloton.

My husband diagnosed MM July '22 at age 53. He did Induction RVD followed by ASCT. For maintenance therapy he was offered a clinical trial Revlimid and Daratumumab. On Dar injection day we were shocked that they were adding Dex. and Singulair (Black Box label warning on this). Neither drug is not listed in the clinical trial information and we were told this study didn't include Dex. The Trial name is DRAMMATIC. Is anyone in this study and if so, is Dex being required? We are considering exiting the trial. Also, considering getting a second opinion on his MM treatment.

I am wondering if anyone knows about any caregiver support groups specific to Myloma that are online and facilitated. I’m not sure why this is showing up as Rose. I have my own account and my name is chaya.

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.