Patient Advocate Foundation Co-Pay Relief program has open myeloma fund per an email today. If the scary looking link I copied below doesn’t work, try copays.org. https://patientadvocate.us1.list-manage.com/track/click?u=99dbf78b6e6c0dc9b5ae9adc1&id=7be8b6be6b&e=4447d51ae9

Welcome to another Motivation Monday! Share something that has helped motivate you through this past week. 💪😃

Dumb/noob lingo question: I've noticed the community uses nicknames for many of the drugs. I'm starting DRVd Friday. If I want to sound like an insider, it's Dara, Rev, Dex, and what? Bort? Vel? Velk? Or no nickname? TIA. Tj

I am started Selinexor (Xpovio brand) with Dex as bridge therapy before I have Car T. Does anyone have experience on the side effect profile and effectiveness? We are just trying to keep my myeloma in check for a few weeks as I wait for cells to come back to proceed on car T so only expect to be on it for one cycle (3 wks on/1 wk off).

Hi everyone. I am about 9 mos post stem cell transplant and am still experiencing a lot of memory issues. Mostly, it’s not retaining very detailed things (like financial numbers) and completely forgetting conversations with people ( I forgot I met someone who I’d met a week earlier, I forgot that I conducted an employee performance review three days earlier, etc). Any information you could share about the duration of memory loss and anything that could help would be so welcome. Thank you!

I am researching all the information and looking for other patients who may have been given too many strong antibiotics to stop MRSA, which resulted in severe kidney damage to my brother, a 66-year-old male. He got MRSA in the hospital after knee replacement. Now, three years later, after being given overdoses on more than four types of antibiotics, he has gone on dialysis. He is now so weak from anemia that he fractured his hip. Tomorrow, he will have his leg amputated. I am determined to find the answer to why I am allowed to keep administering these toxic drugs.

Not sure if I’m officially “newly diagnosed” but it looks like I’m moving towards it. After a basic blood test for my annual physical in February my primary care doctor saw numbers he was concerned with and ordered a deeper test. The results showed IGM (18), IGG(2779), IGA (11) numbers way out of range, as are my Free Kappa (5.71), Free Lambda (.45), and the ratio (12.69), so he suggested I see a hematologist. Yesterday I had a blood test which confirmed those numbers, and a bone marrow biopsy I’m waiting on the results of, and next Wednesday is my PET Scan. So with my blood results already in I’m trying to make meaning of what I’m seeing. My appointment with my Myeloma Specialist at Memorial Sloan Kettering in NYC isn’t until next Friday after all the results are in. Any insights from those of you with more on what these blood numbers mean would be appreciated. I’m also thinking the bone marrow results are also a big factor in the diagnosis, which will probably be available Monday or Tuesday. Thanks!

"March is multiple myeloma awareness month- what can we do to bring awareness?" ✅Share information about myeloma on social media with your family and friends. 🗣 ✅Support other patients through supportive groups like HealthTree Connect: 👇 👥 ✅ Educate yourself so you can educate others. Watch myeloma videos taught by experts at HealthTree University.🤓 ✅ Participate in surveys and studies at HealthTree Cure Hub or join a clinical trial. 👩‍💼👨‍💼. https://healthtree.org/myeloma/curehub ✅ Embrace other patients and ask for help when needed. 🫂 ✅ Donate to the HealthTree Foundation for Myeloma and help fund research in myeloma.📥 Thanks for being part of this great, supportive community!

I was diagnosed with MM seven years ago. I went through four different treatments, most recently with Pomalyst (Pomalidomide) and Dexamethosone. Prior to that I was taking Cytoxan (Cyclophosphamide), Dex and Velcade. Several months ago I began to experience moderate hearing loss, requiring the use of hearing aids. Has anyone else experienced hearing loss while taking these drugs?