Hi everyone, I wanted to understand your experience with KRD/KPD treatment schedules. For those who were on carfilzomib, how long did you remain on the 3-times-per-cycle schedule before your doctor reduced it to 2 times per cycle? Was there a standard protocol followed in your case — for example, completing X cycles before shifting to a less intensive schedule, or did it depend on your PET-CT/M-protein/light chain response? Any insights into how your oncologist decided when to reduce the frequency would be very helpful.

I had Stem Cell . Bone marrow transplant at +35 day. My bones still hurt, how long will that go on?

Have said before they took it from my back bone, and that time they told me I had MM. I never got medicine, and I get checked every 3 months, still to this day. I need a doctor that deals with MM, I don't know where I stand. I can barely walk, pains in my back, legs stomach, there is no cure. This is a long story who can help me? This is my second cancer, I had anal cancer and when they found it it was a stage 4!!! Sounds wild , I know the pain I was in for at least 3 years, and one day I went to a knew dr. He too told me it's an anal tear, I walked out and went to 1 last dr. I knew his name but not how great he really was! The next morning my G.P called me in and he told me I have cancer, went to the hospital and they found it! Just like Farrah Facwett, I made it. I feel the same thing is happening now, I know from the pain , can someone help me please?

My last radiation dose was three weeks ago in my neck vertebrae, and I'm still experiencing fair pain, no taste, and some hair loss. In the beginning, swallowing was very painful, but that's okay now. I voluntarily stopped the Oxycontdine and narcotic skin patches because of brain fog which was frightening. But I'm past the worst of the physical pain now. Can other's give me an idea on how long the pain and zero taste will continue? Many thanks.

Hi, I'm Mary from Greensboro, N.C.. I'm in my fifth year of having myeloma, and early on learned about this wonderful organization. Whenever I meet someone who has myeloma, I ask them if they have heard about Health Tree, if they haven't I encourage them to check it out. In fact, I wish I had flyers I could hand out. I admire Jenny for the wonderful job she is doing in helping all myeloma patients with understanding and dealing with this disease. She is an amazing woman who is doing amazing things. And I'm so grateful for all she is doing to help us on our cancer journeys.

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!

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!

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)