My husband is a newly diagnosed MM patient in March/2025. He was put on CYBOR D therapy.. A few weeks into the infusion therapy his left leg lost all mobility and is extremely weak. It it not due to any bone issue. It seems to be severe peripheral neuropathy due to the chemo treatments. He was perfectly healthy and active (youngish mid 50's) when this happened. Now he is using a walker and cannot walk on his own. His chemo treatments have been finished for 2 weeks now and he has not noticed an improvement. Has anyone experienced this? Does mobility eventually return?

Hello, my name is Joann. was diagnosed with high risk myeloma in may 2025. I have Iga kappa light chain. I was diagnosed through bloodwork at my annual physical. I have always been very healthy, active and fit until now. I do have 4 lesions, but have not ever had bone pain or fractures. I also have 2 genetic mutations that are pretty serious. no organ damage. My LDH started in normal range and remains there. All bloodwork are pretty much in range. At least for now. I have a hematologist and an mm specialist. I just completed my first cycle of immunotherapy. ( velcade, Daratumumab, Dex, revlimad. 3 more to go. All my test since after completing my first cycle have been excellent. My anemia is almost non existent and my m spike began at 3.6 when first diagnosed and is now <0.2. My immunoglobulin A went from 5, 903 to 277. My kappa free Light chain has gone down dramatically as well. 2.14 to 1.06 in range After the diagnosis, I was completely distraught as I believe so many people are. But I have since then, accepted my diagnosis and trying to be more positive. I worry more about choices I will have to make after my 4 cycles. Doctors are adamant about getting a stem cell transplant. I am so scared of that procedure. Recovery seems awful and such a long stay at the hospital. I have inquired about C Cart instead, If I go into remission and then proceed to relapse. But they still want me to get the stem cell transplant first. I live in Ct. And going to Yale smilow cancer center. I do think I should at the very least freeze my stem cells as a just in case. The stress of me having to make that kind of decision is so overwhelming. I know I have time to decide but I can’t even enjoy any progress I have make during treatment. It keeps me up at night. I am really struggling to say the least. I think I’m just looking for anyone who has been in a similar situation as me that could shed some light. Thank you to anyone who has read my post. Best wishes to all for a healthy happy life.

Hello I'm Rysiek, I came from Poland. My English is not very well. I want to speak/ change experiences with someone who... You know- who has the same problem. I know about my Cll from two years. Till today I was optimistic, open minded, etc. Someone, like today I have problem with understanding - why and what for. I look for knowledge new opportunities new methods. But sometimes I feel tired. The first reason - there is no one with him I can speak about this. Terrible but it's true. Greetings for everybody. That is something better than I could spoke about a little about me.

I was recently diagnosed with PV, and so I am still trying to learn about it. I live in the state of Washington. If any other folks have PV I would love to hear about their experiences. Thank-you, Linda

Please share your experience if you have decided to stop all treatment after being MRD negative and having no M Spike . . (I was originally diagnosed with MM in August 2019) My experience was After one year of perfect labs , no mSpike , excellent kappa lambda ratios and 2 consecutive MRD negative results (4 months apart ), I decided to stop my pomalyst and Daratumabab treatment (which I had been on for two years ). Side effects were fatigue, occasional dry cough and feeling not 100% after the subcutaneous shot. I felt my body needed a break . Of course , I’m continuing monitoring my labs and will check my MRD results every few months.

Hi dear fellow, can you tell me how can I increase my white blood cells and my immune system thank you 🙏🙏🙏🙏

My recommendations would be to never do chemotherapy and limit radiation have whole foods and avoid surgery unless it is completely necessary such as a life or death situation. Build up your immune system and don't destroy it.

I'm a Brazilian male 56 yo. I was diagnostic with mm a 18 months ago , my hematologist in Brasil told me I will survive for 2 or 3 years . I never lost my faith in God and I decided to fight doesn't matter what it rakes I start a quimioterapy at University of Miami and never have any side effect , after 6 months I was invited for a trail with a new medicine , Linvoseltamab , and I'm been in remission since January of 2025 . I did another bone marrow biopsy last week and came with deep zero for cancer cells, and my pet scan shows no lesion on my bones. I'm so happy to share my experience with the doctors at UM and I'm hoping this medicine will be the begging of a cure for MM. Thank you.

Hello Fellow Warriors I have IGA Lamda Mutiple Myeloma High RIsk. I have been doing immunotherapy for 6 months now. About 3 months ago I requested the dosage of my dex be lowered from 40 to 20mg. Since then my M protein has gone up. I was at .3 then the following month it went to .4 and then this month it is still at .4 Could this be due to the reduction of the dex? I really dont want to go back to the higher dose but if it is whats causing my numbers not to drop anymore then maybe I should...

What’s something positive you've learned about yourself through your experience with CLL?

This co-pay fund at LLS is now open: https://www.lls.org/support-resources/financial-support/co-pay-assistance-program

Hi! Interested to hear the experiences of those who have started HRT after SCT. I was diagnosed at 28 (33 now) and have been managing the effects of menopause since my transplant in 2021. There’s been hesitancy from my doctors in the past as I take Revlimid for maintenance (5mg) and they don’t have a lot of data for people my age. I take baby Asprin in conjunction with the Revlimid. It’s hard to differentiate between menopause and chemo symptoms sometimes, but I have a psychiatrist wondering if it would help with my anxiety, energy levels, etc. Thanks in advance!

Is anyone in this group participating in LLS's Scenic Shore 150 bike ride this weekend in Wisconsin? Looks like we might have a little rain on Saturday but it'll be plenty warm both days. I'd love to meet up with any fellow Myeloma survivors doing the ride.

Hello, I am 5 years post SCT with Kappa Myeloma. Recent pet scan indicates a spot on my Tibia so maintenance plan has changed. On pomelyst, kyprolis, dexamethazone. 3 weeks on, 1 off. I’m finding I’m highly sensitive to dex. 20 mg. I wanted to ask my oncologist could we reduce that dose even more but I don’t want it to impede my treatment. Was just wondering if others have experience a high sensitivity to it as well. I work full-time and try to time it so I have the weekend to recover, but it takes about three full days to feel back to normal.