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!

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!

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.

Good afternoon, I'm curious to hear if anyone has suffered with NK due to severe dry eye post diagnosis and SCT. I started with severe dry eye after my stem cell transplant. What I did not know is I also had NK, which muted the pain signals, kind of like neuropathy. I pushed through the blurred vision and light sensitivity, thinking dry eye is a benigne condition. When my vision became bad enough, that it was interfering with my work and quality of life, I sought out a dry eye specialist. I was immediately diagnosed with NK and told I was at high risk of losing my left eye. I had a Prokera placed that same day, which stayed on for a week. I then had a Prokera placed on my right eye the following week, and then another on my left the week after. All while waiting on an insurance approval for eye drops called Oxervate, which run $100k for an eight week supply. I am on week three of my treatment and have not noticed any improvements. I brought this up to my oncologist, but was told it is not related to my cancer or treatment. If anyone has had a similar experience or knows anyone that has, I would be interested to hear how you or they are doing. Thank you!

The Shut down has effecttively ended. The Affordable Care Act Subsidies will expire at the end of the year