Good afternoon all, Mike here. First time in this or any other groups like this with HealthTree. I am so excited to be part of this and appreciate being here. As a survivor, 10+ years now, of Multiple Myeloma t(11,14) I now speak on self-advocacy in cancer (as well as clinical trials advocate) and need to continue learning to make sure I bring the most current, accurate, and comprehensive information to my audiences. I've been on 2 clinical trials, both Bi Specifics - Teclistamab (now Tecvayli) and Cevostamab. I have been off the Cevostamab for 3+ months now, and my MM is still undetectable. I hope to continue learning from everyone here. Mike

Hello, my wife had a plasmacytoma proximately 14 years ago has been going to the oncologist every few months since then and luckily nothing has changed in terms of blood work or urine analysis. She had a hip replacement too. She is currently 48. We hope that this trend continues. Has anyone else had this type of tumor removed and has had no signs of myeloma since then?

I was diagnosed with MM in 2019, had a autologous stem cell transplant 12/2019, had a Complete Response, then MRD negative since then. I'm on Lenolidimide maintenance. I was diagnosed with Ocular Myasthenia Gravis March, 2022. Beginning in early September, 2023 usually beginning in the late afternoon, the skin on my upper belly begins to feel like it has severe sunburn. Both thighs begin to feel the same, then my shins and upper feet and chin and cheeks. Sometimes it takes 3 hours for all the areas to feel like they have a sever sunburn, sometimes it only takes about an hour. When I touch the skin where the sensation is hot, the skin is normal temperature and normal color (no rash or signs of irritation). It feels like I fell asleep face up on the beach and sustained sunburn. I don't have any 'burning' sensations on the back of my body. These sensations have been happening every day and usually last about 6 hours. Has anyone experienced these types of symptoms? I belong to three MM Support groups, and no one in these groups has experienced the types of symptoms I'm experiencing. After my stem cell transplant the type of neuropathy I experienced was a numbness in my big toe, and stinging bottom lip. I have not experienced any other forms of neuropathy. Those who have experienced neuropathy describe tingling and/or pain in feet and/or feet. I am now taking Calm Magnesium powder to help me get to sleep. However, I have to wait until the sensation of heat calms down, usually by midnight. Does anybody have any ideas how to reduce the sensations of severe sunburn on skin that is not sunburned? I am working with my oncologist and neurologist but I'm hoping someone 'out there' might have some ideas that may help me get some relief.

I read that use of Daratumumab can lead to false positive test results for individuals with IgG kappa myeloma protein leading to inaccuracies in determining the complete response. Daratumumab interferes with routine, electrophoretic based M-protein diagnostics. There is a way to parse the effect of Daratumumab from the M-protein by using Hydrashift assay (Sebia) to resolve t-mAb interference on immunofixation. Has anyone experienced this issue? This only affects people with IgG kappa.

My sister is fighting mm. Was first diagnosed late April this year. She has been struggling with constantly needing units of blood (like over 30 units before they were able to find the source where her blood was going. They found several avm’s in her lower bowel and small intestine which were all cauterized. She did well for three weeks before she needed another unit of blood. We hoped that she would not need more for another month but two weeks later she needed two more units. I’ve been reading several articles and blogs about mm and support group chats looking for someone one with similar experience but so far I haven’t found anyone. Is this normal for mm patients?

Dear all, We have a paid study opportunity for patients with amyloidosis. You will be paid around 100 USD for the time you spent (15-90 minutes) 🔺 If you are interested, please click below ⬇️ to join and see if you qualify. https://rarepatientvoice.com/rp/MBCISS

Im a 59 yr old woman w t(4,14) HR lambda light chain MM. in remission after a ASCT one year ago. My kappa light chains are going up each month, altho m spike still 0; should I be worried?

I'd like to know what vaccinations post CAR-T your center is giving and when as I understand most antibodies are lost since the CAR-Ts can't tell the normal from abnormal plasma cells. Please identify which CAR-T you had as well. TYIA.

Hi I had a Plasmacytoma in July last year … very large … this year my bloods continue to go up no M Spike just high Kappa Light Chains and Serum B2 is high anyone experience this? Feeling little anxious about it

Let’s talk about hair loss from melphalan. I know, in a grand scheme of things, it’s a pretty minor side effect. However, it’s emotionally scary. How long does it take for the hair to start growing back? How did you deal with the hair loss?

Hello my mom has MGUS and my grandmother had Multiple Myeloma. What measures can I take as a 26 y/o healthy female. What lab work can I get drawn at my next physical? Do I need to go to a hematologist?

Hello all! I have a coachee experiencing neuropathy in the front of her legs. Anyone else? Also I wanted to know if anyone has something, vitamins, foods, topicals, drugs that they have tried or used to help. Thanks for your input! Have a great day.

Has anyone been treated with Kyprolis and Darzalex and if so what were the common side effects. If completed treatment what were your overall results? Thanks