Hello, For those of you who have taken Venetoclax as maintenance therapy for Multiple Myeloma, did you ever relapse while on venetoclax, or did you ever have to switch from venetoclax to something else after being on it for a long time? Thanks

I've become interested in red light therapy and purchased a device that dispenses red and near-infrared light to promote healing. My MM has been quiet since my ASCT in 2021, thankfully! I'm 65, not taking any maintenance drugs. But I also have near-constant nerve pain and discomfort in both legs and feet from previous nerve damage, and also severe joint pain in both knees, hip and ankle, hence my search for treatments that might provide some relief. (I also receive acupuncture regularly). I've seen suggestions online that since red and NIR light increases energy uptake in cells and promotes cell growth (and healing), it could hurt me if it promotes the growth of malignant plasma cells in my bone marrow -- the last thing I would want. Does anyone know anything about this? I'm refraining from using the device until I get more information.

Hello I am Interested in anyone that has had treatment-Bispecific and how the side effects were. My doctor just suggested this treatment option.

For those of you on Social Security SSI, SSDI or retirement, you eed to be aware of an emergency notice that the Social Security Announced. Effective immediately, all overpayments made in error either by the administration or by recipient incorrect reporting will now have to be paid back immediately, not over a period of time, However, for those listed above it will be a clawback of 50%.

I was diagnosed on routine cbc 6 yrs ago with essential thrombocytosis that about 18 months ago morphed into polycythemia Vera. Both were controlled with hydroxyurea 500mg/day and phlebotomy for the pv but itching was extremely annoying and I switched to Jakafi 2 Mo ago. Symptoms disappeared almost immediately but now for some reasons platelets have increased and I’m being increased to 15 mg twice daily from 10 mg. Has anyone experienced this?

I am a 67 year old woman recently diagnosed with MM. My oncologist also strongly suspects I have cardiac AL Amyloidosis. Both the bone marrow biopsy and the fat pad biopsy were negative for amyloid, but now he has scheduled a 90 minute cardiac MRI and if that is inconclusive, he wants a cardiac biopsy. Are false negatives common with amyloidosis? Has anyone else been put through this? With two negative tests already, I question the need for further testing. Thanks.

My doctor passed away.

Hi I had a SCT back in October 24. All went pretty well except I am still finding my red blood cells are struggling to return to normal. I got as high as 100 but am back down to 88. I take 10mg Lenalidomide a day and my doctor wants me to come off it for a month to see if it improves my red blood counts. Has anyone else had this problem?

For those of you who are on maintenance and are seen by an MM specialist, how often do you see that specialist? I receive treatment at a local infusion cancer center, and I go every three months to a large cancer hospital for complete myeloma blood work and to meet with my myeloma specialist. He wants to alternate those visits with his ARNP which I have resisted thus far.

Feeling anxious, I am a 65 yr old F, diagnosed January 23, 6 cycles DVRD and auto stem cell transplant September 23. I have been on maintenance since January 24 10mg lenalidomide 21/7. My light chains started increasing a few months back possibly due to vaccination process. Last month M spike was detected again 0.02 and this month it is 0.03. After 2 BMB’s in 2 weeks I have low cellularity so they can’t do all the testing they need. Has this been an issue for anyone and did it impact your relapse treatment options?

Hi everyone, Regarding acyclovir: Who, currently on monthly maintenance with daratumumab, is still taking it? I have been receiving a sub-q injection of daratumumab every four weeks since March 2023 and have been taking 400mg of acyclovir twice daily since September 2022. Has anyone in a similar situation managed to discontinue acyclovir entirely? TIA!

This study, led by Dr. Larry D. Anderson Jr. from UT Southwestern Medical Center, aims to understand better how multiple myeloma patients feel about receiving treatments under the skin (subQ) versus through the vein (IV), and how those preferences affect their quality of life and treatment choices. Adults (18+) with a multiple myeloma diagnosis can take a 15–25 minute survey (26–50 questions) covering their diagnosis, treatment experiences, and preferences between subQ and IV administration, along with basic demographic information. Your answers are anonymous, and your insights are truly appreciated! You can take the survey here: https://htree.org/subcutaneousintravenous

Hey all! I was diagnosed with Multiple Myeloma the week of Thanksgiving 2024. Other than a low iron test I had no symptoms. Fast forward, I started treating 3 weeks later due to Insurance shenanigans, but treatment with Lenolinamide 10mg, Velcade, Darzalex Faspro and Dexamethasone 40mg , has been successful so far. I'm currently in Cycle 5 of my treatment plan.. I had a Bone Marrow Aspiration last week and my numbers are good so I will start testing May 1st for Stem Cell Transplant. So many questions I should have but a bit overwhelmed by the fast pace of it all. I'm still working and blessed to have that provision, but would love to hear about others walk with Stem Cell Transplant. Thanks in advance! 💜