I am smouldering and not in treatment, but during open enrollment last year in the fall, I made sure the usual mm drugs were covered. Now I am finding the formulary is dropping drugs. These are unrelated to myeloma but I am upset to think they can do this during the year. Can they also drop some of the previously approved myeloma drugs? Would I have any recourse?

Hi all~ I’m wondering if anyone in the 55 & under group who has applied and received Social Security Disability would have the time &/or energy to talk with me about your experience. I just applied online in February. Thanks for your help!

New Social Security overpayment law goes into effect today. If you were notified by the Social Security office that you were overpaid you used to be able to repay the department at 10% per month until it was repaid. that is still ineffect for overpayments made prior to March 27, 2025. For Overpayments that occur after 3/27/2025, you will have to repay it 100% of payments until the overpayment is payed back. Over payments may have happened if the Social Security department miscalculated your payments or if you failed to update earned income with them. You can appeal the issue or if you agree and cannot afford to pay it back as stated, you can request a change in the overpayment recovery rate. Go to ssa.gov for more information

Amyloidosis Support Groups In-Person Meetings https://www.amyloidosissupport.org/upcoming_events.html April 5th, 2025 (VA, D.C., MD) (Drs. Ibrahim Saeed, Timothy Welch, Sumeet Mitter, Farooq Sheikh, Joban Vaishnav, Ana Barac, Amitabha Sarma, Marion Cole, Carol Ann Huff,, Neeraja Tandra, Carmen Elena Cervantes, Robert Bulat) April 26, 2025 (PHILADELPHIA MEETING) (Drs. from UPenn and more to follow) April 26, 2025 (PORTLAND OREGON-OHSU) (Drs. from OHSU and more to follow) These are small and topic-targeted meetings, where you have the chance to meet with local experts and ask personal questions face-to-face. Also, a place to get to know your doctors personally! I highly recommend it to everyone. Register here: https://www.amyloidosissupport.org/upcoming_events.html

Would like to speak with someone with same diagnosis

On Wednesday, April 2, I am participating in a roundtable webinar with the Cancer Support Community on Utilization Management. We will discuss the recent prior authorization and formulary changes being used by insurers to delay or deny patients’ access to Libtayo or Revlimid. As I have recently experienced this denial of Revlimid, that will be my role on the panel. If you are interested, here is the link to sign up; https://events.zoom.us/ev/Aj20IEYrxUTUTJvmuZRZYoK0coIymO172n9rJbxSXr4y7Edaj4J9~AuKsJhJs6t_WcTqHERh5jfXlOUo0_ccTSEwY2RzY62ezzKufnBEdtv7wYQ?eType=EmailBlastContent&eId=117faff7-9e6b-4c66-a0ae-c1f626f9279e

🌿 Patients & Caregivers – This Challenge is for You! 🌿 The HealthTree Challenge: Hike & Wellness is not just about hiking—it’s about overcoming obstacles, building resilience, and supporting blood cancer patients and caregivers. We’re looking for 50 participants to join us in this transformative experience—a weekend of connection, wellness, and physical challenge in honor of those impacted by blood cancer. 🎗️ If you’re a patient, caregiver, or supporter, this is your chance to: ✅ Take part in a wellness-focused event ✅ Hike with a team of fighters & advocates ✅ Raise $1,500 to drive critical support for patients & research 💙 Together, we can turn strength into action. Join us today! 🔗 https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia #HealthTreeChallenge #SurvivorsAndCaregivers #StrongerTogether #HikeForACause #HealthTreeFoundation

Hello everyone, I am 43 years old male, and I was diagnosed with Multiple myeloma primary plasma cells leukaemia free light chain back in November 2024, when I started feeling lower back pain and I ended up in ER after a VCF in my spine. All tests was done when admitted to the hospital, and my journey started with this disease. At diagnosis my FLC ratio was at 31, and almost back to normal after completing 2 DARA VRDC cycles. Fish is negative. CD56 marker is negative. Plasma cells in peripheral blood was 16%, and in bone marrow 19%. After completing cycle 2 plasma cells were undetectable in peripheral blood and less than 1% in bone marrow. After completing cycle 3 I was able to achieve MRD negative. The treatment plan is to complete 6 cycles of DARA Vrdc as an induction phase, and consolidate it with an autologous transplant (stems collection was done post cycle 3). As Currently I am undergoing cycle 6, and the autologous is scheduled mid next month, I am wondering if in my case this is the best possible course of action.. I need opinions please 🙏🙏

Hello all! After having achieved MRD negativity, if and when Myleloma “comes back”, how often does it come back with a vengeance? It seems like that’s a rare case, and that in most cases the FLC begins to climb and a patient has time to weight the next treatment options. Is that accurate, or could a patient present one week with no in crease in lab number, but full on hypercalcemia or kidney disease a month later? Thanks!

I am changing drug treatments for Darzalex with pomalyst and Dex to Kyprolis with pomalyst and Dex. Read that some who were using Kyprolis had night sweats. I am interested in other side effects. Since I continue to jog and lift , has fatigue been a new side effect?

I will be hosting a Q and A on April 1st at 1:00ET to address any financial questions you may have. Here is the link to add your question/s prior to the event. I hope to see you all there. https://docs.google.com/spreadsheets/d/1lQsV9-xBw-l5xtZZPPSR7GmpLe_KPF_qMvTmkd-VLzY/edit?resourcekey=&gid=1873769259#gid=1873769259

if any of you have ever sought Financial Assistance through A non-profit such as LLS or Healthwell or from a pharmaceutical Patients assistance program, please let me know. Just leave a comment. Thanks