I relapsed from my sct within a year. My specialist is putting me on xpovio, valcade and dex to get me ready for car-t I was wondering if anyone had been on that regime and how bad were the side effects? The doctor said can make you very nauseous. They gave me meds to help with that. My other question was if anyone who relapsed so quickly after sct had a longer lasting response to car-t. Thank you.

My SERUM PROTEIN ELECTROPHORESIS labs for the first time indicate, “Double gammopathy with IgG Kappa paraprotein”. I never saw this previously and have not yet had the opportunity to inquire about it with my MM Specialist. I am currently receiving Daratumumab injections, and take Pomalyst 21 days each month. I am wondering if anyone else has had this show up on their labs and what it may indicate? Thanks in advance.

Hello - my name is Chris and I was diagnosed in 2020 during the pandemic after my mammogram showed enlarged lymph nodes. I went through 4 years of watch and wait with exhaustion being the reason I could not continue to work. Last August my numbers jumped and I started on acalabrutinib (Calquence) 2 times a day. I also took Acyclovir and Dapsone to prevent shingles and pneumonia. After starting I found out I have a hereditary issue and cannot take Dapsone and Acyclovir caused so much nausea and upset stomach I have since stopped them. Eight months later I feel we have the right dosage and the right over-the-counter and medications to assist in some of the side effects and I hope to be able to continue Calquence for years like other people. I still have nausea occasionally and I take Move Free for joint aches. I am also taking Folic Acid. It took 8 months but I'm feeling better and happy we have drugs like Calquence to help! Good luck to everyone! These communities are great!

Hi everyone, I wanted to introduce myself here. My name is Dalton, and I am the Patient Engagement Manager for CLL at HealthTree. I coordinate and host the educational webinars for our CLL community and work on ways to figure out how HealthTree can better fit the needs of those living with CLL. Please feel free to reach out to me whenever! I love talking with members of this community and finding ways to help.

Hello I’ve been in negative RMD since October 2024, my maintenance consist of Lenolidamide, darzalex fast-pro monthly and dexamethasone monthly. My IgG numbers were as low as 350 but with 2 IgIV it improved to 625. Now it is back down to 466. My oncologist is hesitant to administer another IgIV due to the potential kidney damage. I have not had any infections. My question is this…does anyone share my experience and when did the IgG numbers stabilize?