I have multiple myeloma light chain as any of you had a succesfull zirconium teeth implants i want to have one , but afraid that well not heal is zirconium bad for Myeloma?

Well it’s been a long slow road. I started with anemia in 2004 and ended with a smoldering MM diagnosis. In 2014 the MM became active and it was time for treatment. I had several small lesions from head to tib-fib, and 60% mm in bone marrow. My second trip to Dana Farber I was offered a clinical trial. I had been interested in them for years because we needed something to help rid MM. the Determination Trial was basically the Gold standard at the time RVD and SCT. One arm waited on transplant, I ended up on the early one. After transplant I was put on revlimid maintenance. The dose was lowered several times due to severe diarrhea. Eight years later I had several small strokes. We still don’t know what caused them but on workup they found a brain aneurism. So I was taken off the rev and had 2 stents placed in the brain. it’s been 3 years and so far no return of MM. the neuropathy continues as does the diarrhea. I am on IVIG monthly because my immune system never rebooted, and Aredia every 3 months. I’m still here and going strong. Without the clinical trials we would never have so many more treatments! It’s the way to go!

I relapsed after 9 months after ASCT and now contemplating Bispecific or CAR-T. If anyone has faced this situation I would like to know what drove their choice to pick one or the other therapies.

Is your Myeloma specialist forceful with treatment decisions (e.g. my way or the highway), or is it just mine? My experience with my oncologist is he walks into the room and says this is what we are doing! He literally tells me if I don't want to listen to him, I'm more than welcome to go elsewhere (it's either I go with his plan or I go somewhere else; he's not interested in hearing my opinion). During induction therapy when my disease stopped responding to the four drug regiment (Dara, velcade, dex, and Revlimid), he tried to force me to start taking kyprolis, even though I kept telling him I was not comfortable with taking that drug because of the potential heart toxicity side effect. We got into a shouting match over it, until he finally backed down and said there was something else he could put me on. He eventually put me on venetoclax, and like magic, it drastically drove down my M-spike in just a few weeks and I was able to undergo stem cell transplant right away.... Have you experienced similar dynamics this with your mm specialist where they aggressively try to force you into going along with their treatment plan without giving you the opportunity to be involved in your own care? It makes me feel like my oncologist is driven by a secret motive such as meeting a quota or conducting an experiment or something 🤔

Hello, if you've had Car-T (Carvykti) can you please share your experience with me?🙏 My Myeloma specialist is scheduling me for it, but I don't know what to expect. I had autologous stem cell transplant in September 2024, and relapsed one year later last month. My oncologist insists on Car-T as my only next option to help me buy me longer time. How did you feel when you had Car-T, what were some of the side effects, how long did it take to recover, do you ever feel normal again? I look forward to hearing about your experience, thank you 🙏

💚 Thanks to your participation, we completed the Tree of Hope! We’re deeply grateful for every name shared. Now, by also sharing your records, together we can bring hope closer and move toward a cure. 🌳 Our Tree of Hope grew with every name shared; patients, caregivers, and doctors standing side by side to create something bigger than ourselves. 👉 Be part of the cure: https://htree.org/takecontrolofyourhealth 🩸 As we close Blood Cancer Awareness Month, we honor the strength of our community. From EDUCATION that empowers patients with knowledge and COMMUNITY that brings comfort, to tools that help you TAKE CONTROL of your care and ADVANCING CURES TOGETHER, this month has been about more than awareness. It’s been about ACTION. ✨ At HealthTree, we believe that within the greatest adversity exists the greatest potential for doing good. REMEMBER: Together We Care. Together We Cure. THANK YOU!!!

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🌺 Run Paradise. Save Lives. 🌺 HealthTree is proud to be an official charity partner of the 2025 Honolulu Marathon! You can join our inaugural VIP Charity Team, or invite a friend or family member to take on this inspiring challenge to help bring hope and progress to blood cancer patients everywhere. 🏃‍♀️💚 Why join? ✔️ Low fundraising minimum ✔️ Personalized training & fundraising support ✔️ No race time limit ✔️ An unforgettable race in paradise Every mile you run helps make a difference for blood cancer patients. ✨ Spots are limited, secure yours today! 👉 Register here: https://give.healthtree.org/event/honolulu-marathon/e710342?c_src=socialmediaorganic If you have any questions or need more information, please contact support@healthtree.org

Drs. want to start my husband on Velcade once a week for 8 months. I'd appreciate if anyone can share their experience while on Velcade. Thanks!

Be aware that the Social Security Department will no longer be sending out physical checks. You need to have a account for it to be deposited. This is effective today. Sept. 30th

I’m my daughter’s caregiver and concerned that she is experiencing the same symptoms of MM after her SCT in May of this year. She started her first round of 5 mg Revlimid (on 21 days off 7 days). Prior to commencing Revlimid she was feeling pretty good with no MM symptoms. However, since starting the drug she’s experiencing extreme sweats, breathlessness and fatigue. Any advice and comments would be very much appreciated.

Hi has anyone experienced an allergic reaction to Gammunex c? I had a pretty bad reaction at my last infusion hives, heart rate went up to 135 BP went up to 145 over 83 which is high for me (norm is around 98 over 70) i found out later that the pharmacy said it was a "Bad lot number " and therefore they were throwing out that batch. Uuuggg. Im still experiencing palpitations 5 days later. Has anyone had Gammunex c? I looked up their website and it looks like they've had this problem