Hi everyone, I'm a 47 years old italian patient, My MM diagnises go back in 1997, so now are 28 years that I live with it (Fortunally!!) As you can imagine I had a lot of treatment and autotrasplant, now I'm with Talvey, anyone has fever about 3 days and also one week later injection? Do you have vaccination (Flu, Herpes zoster,Streptococcus pneumoniae, Covid) while you are on Talvey treatment ? Many thanks, Marzia

Do you have any experience with getting myeloma care (treatment or other) while traveling or living outside the US? Any info/insights much appreciated!

This event will NOT be recorded, so we’d love for you to join us live and be part of the conversation! We’ll be coming together to share what we’re thankful for in our lives. It’s a warm, welcoming space to: 🤝 Meet others living with CLL 🗣️ Share your experiences 📚 Learn from the stories and insights of others Your voice truly matters, and what you share can help shape future conversations and support. ✨ Register now: https://healthtree.org/cll/community/events/nov25-gather-community-event-thankful?utm_source=social_media&utm_medium=connect&utm_campaign=SMorganic&utm_content=general

I just started treatment last Friday and after 4 days my head, ears, and forehead began to itch like crazy. Then I noticed red blotches on various parts of my body. My team said its a revlimid rash and have me taking claritin and benadryl. They will also prescribe a cream to use. Has anyone had this rash right after starting treatment? I am on Dara KRD treatment. Does this just disappear after some time or is it constant? Hoping it resolves and doesn't escalate. My team advised me to let them know any changes. Any comments or experiences with this type of rash are welcome.

Has anyone experienced serious skin issues, peeling, itching and pain from taking Talvey?

I started having light sensitivy and what was called auras, I called blurred or swirling in my eyes. They would drain and sometimes feel like I had gotten punched in my right eye, but the pain stayed as if the fist was still there. Then I would get a migraine. I explained this to my oncologist, who referred me to a ophthalmologist. He did testing and determined that I had dry eye, and my right cornea was scratched. Mind you, prior to my oncologist referral, I had seen a optometrist and gotten stronger glasses, that didn't help, and I didn't need. I was told to get Systane drops over the counter, and use 3-4 times a day. Things should get better with continued use. He also told me that the chemo given for the stem cell transplant was the culprit. I have had two SCT's. My symptoms did improve, I can wear my reading glasses, and only use the eye drops a couple of times a week now.

CPR Funds Now Open: Multiple Myeloma, Multiple Myeloma Health Equity, Ulcerative Colitis The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.

CPR Funds Now Open: Multiple Myeloma, Multiple Myeloma Health Equity, Ulcerative Colitis The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.

Has anyone experienced severe dry mouth symptoms 50 days post ASCT? It is extremely difficult to eat and talk. Gum, lozenges, etc. don't seem to help. Eating is difficult as it is having limited taste. Any suggestions?

I’m concerned about what looks like progression of myeloma. (I realize that many data points need to be factored into any analysis, but I’m here focusing on changes of Kappa & Lambda QNT light chains over the past 3 months (12 weeks), from Aug 8 to Nov 13.) Kappa QNT shows a steady decline from 10.31mg/L to 3.14 which averages a decrease of 7.07 over 3 months (0.59/week) Lambda QNT light chains over the same timeframe increased from 74.45mg/L to 123.29 which is 48.84mg/L in 3 months (12 weeks), which averages 4.07 mg/L rise each week. BUT, the past 5 weeks it has shot up from 85.2 to 123.29 = 7.62mg/L each week—almost double in the past month when compared to the last 3 months. I’m on DKd. My oncologist is at this point suggesting CAR-T the end of January. If the Lambda rate of rise continues at 7.62mg/L per week, by the end of January I calculate it could be approaching 200mg/L. Should I be concerned? Thanks!

This one’s live only (no recording), so we’d love to have you there in real time! Join the HealthTree for MPN Community on November 18th for our next Community Gather event, where we’ll be sharing what we’re thankful for and hearing from others in the MPN community at 05:00 PM EST It’s a relaxed space to meet, share, and learn from people who truly get it. Your voice matters and can help shape future conversations. 💬 👉 Watch. Share. Connect. Register now! https://healthtree.org/myeloproliferative-neoplasm/community/events/nov25-mpns-gather-community-event-thankful?utm_source=social_media&utm_medium=instagram_stories&utm_campaign=SMorganic&utm_content=general