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

Hi. I was just referred here by a local support network. I was diagnosed with AML on Sept 13, 2025. I went to the ER because I had a mild pneumonia, yet I could not walk 20 feet without being winded. Turns out my hemoglobin was very low and I received a blood transfusion right away, before being admitted to the hospital. After 2 rounds of chemo, I am in remission with genetic mutations still present. Actually, I haven't had a bone marrow biopsy since I started round 2 so maybe they are gone? I'm scheduled to have a BMT in December and am doing all the preliminary tests that will clear me. I'm 58 and I have a 13 year old that I would like to see reach adulthood. I try not to dwell on that, but it is my motivation to go through with BMT. I try to just do what is in front of me and focus on the best possible outcome, but I feel like I need to prepare myself to be in the hospital for 4-6 weeks, so I am looking into the future a little bit. For those of you that have had BMT, what are some of the things you found valuable to pack for your time in the hospital? Did you opt to bring your own clothes or wear a hospital gown? Any other words of wisdom are greatly appreciated as well. Thank you all for being here. I hope that in the future I will be able to offer support to others.

Hello everyone, I know this is a bit short notice, but I’ve been busy reaching out to many people that I couldn’t post here until today. I am my wife’s caregiver, and I want to share a little about her incredible determination. She never stops seeking answers and doing everything she can to contribute toward a better quality of life and hopefully, one day, a cure! Last year, with the support of a wonderful group of friends and our family (myself and our two daughters - 13 and 17), she created an event to raise funds for research. Since HealthTree has been very supportive of her and has been helping to accelerate this important work, we're excited to continue making a difference together and to run this event once more. The Myeloma Awareness Movement – Zumba Party campaign goal is “LET’S MOVE until a STOP is put to this disease, to keep coming back!” Just like multiple myeloma, Zumba can be very challenging for most people, but with the right strategy and support we can find a way to overcome the difficulties and to adapt! Moreover, Zumba’s rhythm is contagious, happy, energetic, and fun, and we all need that! (Trust me, I have zero skills, but I had a blast last year). Respecting health conditions and abilities, your Zumba moves can be anything: the dance itself, just singing, or stomping your feet, clapping your hands, etc. The most important thing is to MOVE and feel GOOD! How you can support this campaign: Join us in Toronto and spread the word: Make a donation and bring your family and friends! We can host up to 240 people, and advance registration is required here: Myeloma Awareness Movement - Zumba Party 2025 Join online OR at your own pace and spread the word: If you can’t attend in person, you can still dance Zumba! Make a donation, follow the event live, and/or watch the recorded video using the respective links on the donation page. Support by donating and spreading the word: If Zumba isn’t your thing, you can still contribute, and invite others to do the same! Donation page: The Myeloma Awareness Movement - Zumba Party 2025 - Campaign Thank you so much for taking the time to read this message. Your support truly makes a difference! TOGETHER WE CARE. TOGETHER WE CURE. (Zumba Challenge - If you feel comfortable, take a picture or make a short video of your move(s), share it on your social media and hashtag #HealthTreeForMyeloma)

An ACA insurance broker told me that he recommends his clients with expensive chronic conditions choose the Bronze ACA plans, which often have the lowest total cost (monthly premium x 12 + out-of-pocket maximum). He said if you're blowing through your out-of-pocket maximum in the first few months of the year, you don't have to look at co-pays, deductibles, etc.

I was wondering if anyone had injection site reactions with Kyprolis IV. I have had 3 cycles as part of DKd (Dara only once a month). From the beginning burning $ stinging at infusion site. As cycles progressed., they traveled 5” up my arm. IV first & second in Cycle 3 were mercifully painful. Onc nurse suggested pulling it and starting another vein. I declined since we had about 7 min. to go! Both nights were terrifying: splitting headache; total body burning up (but no fever); body aches. In morning as I forced myself to get moving, these slowly dissipated. My oncologist said it wasn’t an AE but an “Infusion rxn” So I did a thorough online search & found that kry is toxic the endothelial cells lining veins😳. Remedies included diluting Kry w/ dextrose- saline; slower infusion rate; stopping and restarting. Yesterday I had my 3rd kry+ dexameth. I reported my experiences w/ the two previous infusions to the administering nurse and asked if dilution was possible. Given my prior experiences she would not proceed. She contacted my onc. who agreed to add a bag of dextrose+saline. Bingo! Zero pain during or after infusion. Slight headache; slight “body heat”, no feeling like a truck hit me! Just a note for those using or considering Kyprolis. This was MY experience and I hope remedy. Good luck!

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Hi Everyone! It's Chio from HealthTree, I want to invite you to join us to our next online event! 🌟 On November 18th at 03:00PM EST hear from 3 myeloma patients who have been living with the disease for 10+ years. They’ll share what’s helped them adjust, manage side effects, and find balance in daily life. Get practical tips, real stories, and encouragement from people who truly understand. 👉 Whether you're newly diagnosed or years into your journey, you’re welcome here. Register now!: https://healthtree.org/myeloma/community/events/nov25-living-with-myeloma-insights?utm_source=social_media&utm_medium=connect&utm_campaign=SMorganic&utm_content=general

Has anyone used motixafortide as a mobilizing agent before stem cell collection? If so, could you tell me where you were treated? I had a “failed” collection last week (in my first line of treatment) and am trying to decide how/whether/where to try again. Thank you in advance.