I had an appointment with a nutritionist prior to my admission to the hospital for ASCT, and one thing she told me that surprised me was that all yogurt with active cultures (doesn’t all yogurt have active cultures?) was off the table for at least 2 months after transplant. Did you have to give up yogurt for a few months?

Here is a link to helpful/comfort items for stem cell transplant. If you would like a printable PDF version of the document emailed to you, please email me at michelle@healthtree.org https://docs.google.com/document/d/1JMtkmIL6D0Y3LdL3ecBMj3t3cQYi7SWnSBHqU3xGl1A/edit?usp=sharing

Has anyone tried talquetamab? Sadly my Carvykty CarT therapy didn’t work (28 days post!)

Dry mouth and loss of taste. Any tips? These are side effects from Talquetamab.

Has anyone had Carvykti and it’s taken a long time for the WBC, Platlets and Hemoglobin to go back to normal? My husband had the transplant June 20th, had a severe CRS reaction and neurotoxicity that landed him in ICU. He is on his 4 months and blood counts are still low. Marrow needs help to generate red and white and platlets.

Hello, wanted to know if anyone tried Teclistamab and what side effects have you experienced and how the disease responded to this particular bispecific. Thanks all!

New patient to the group. For 1.5 years, primary care was perplexed by m-spike on routine bloodwork, .8. She sent me for consult with oncology, who ordered more bloodwork and scheduled a follow up in 6 months with MGUS diagnosis. Oncology bloodwork indicated kappa light chain 20.7mg/L and 114.8 lambda light chain (both marked as high) with K/L ratio .18. After reading these results, Dr moved my next appt to 3 months out. These numbers seem low compared to active MM patients, but confusing nevertheless. I'm 49 with overall good health. For past few months struggling with significant dizziness. Can't help but wonder if it's all connected. My mother's sister is currently battling MM, so I know all too well how difficult the diagnosis is.

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.