Hello all! I was dx in 2009 with Kappa light chain IgG. SCT in 2009. Drug free for five wonderful years then relapse in 2014. Been off and on maintenance therapy since 2014. I have been doing really well with maintenance and currently on Darzalex injections every four weeks. My light chains have been in the abnormal range since February of this year. With low IgG levels for several years. My MM specialist ordered more testing done a couple weeks ago and my MM has now evolved into Light Chain Escape. Which I understand that my MM can no longer be monitored by blood tests but with BMB. Has anyone have this form of MM? How is your disease monitored? What treatment are you currently on? Side effects?

Hello Everyone, Keep an eye out on the non-profit grants. They open and close rather quickly sometimes. Also Medicare is in process of solidifying 2025 changes. Please tune into my Webinar regarding the changes and how they will affect you, September 6th at 1:00 EST. Pease register if you're interested. A lot of interesting stuff is happening!!!

Hello Everyone, Keep an eye out on the non-profit grants. They open and close rather quickly sometimes. Also Medicare is in process of solidifying 2025 changes. Please tune into my Webinar regarding the changes and how they will affect you, September 6th at 1:00 EST. Pease register if you're interested. A lot of interesting stuff is happening!!!

Does anyone else suffer a transient, post exertional malaise? I am 3 years post ASCT and on a 21:7, 25mg Lenalidomide, 20mg dexamethasone regime. I take the dex on a Friday morning and on a Saturday could do a 20km bicycle ride equivalent without much concern. If I cycle 20km on Sunday morning however I will collapse by the afternoon and this may continue through Monday and Tuesday. If I don't exercise on the Sunday then I am happily able to cycle 50km Tues, Wed, Thur & Fri. For the first two years of maintenance I never had this problem though I had Covid a year ago so I'm trying to figure whether it might be that or possibly development of a dexamethasone related adrenal insufficiency? If you've gone through the same I'd be very interested to learn.

I have a problem understanding my BMB report. I haven’t seen my doctor yet but am concerned with what I am reading. The final con conclusion on the pathology report read: Persistent plasma cell myeloma with 15 to 20% kappa restricted plasma cells and aberrant CD56 expression! Can someone shed some light on this?

Just started with Elrexfio (Elranatamab) yesterday. I like to use Elrexfio as I can see it as a spell used by Hermione in the Harry Potter series. Looking forward to sharing experiences as we move forward.

Hi all, has anyone else felt increased pain while taking teclistamab/tecvayli? I was told that many patients have reported pain but for how long after starting treatment? Thanks for sharing your experience!

Hi all, My husband is 35 days after SCT. He's doing pretty well all things considered. Blood counts, etc are recovering and some at at normal levels. He's back at work (mostly remote), working out, etc. One thing that's not gotten better is gut issues. First it was the interminable hiccups, then constipation and gas, now it's the feeling of being full very fast and having belly ache, specially at night. He's gotten many different meds, nothing has helped. Is there something that helped folks who had similar symptoms? Thanks! Margarita

Hello! I have Kappa Light Chain myeloma, high risk. I had four rounds induction with RVD and first stem cell transplant in September, second in February. Both were auto transplants. During the second, I got sepsis and was put on meds to increase blood pressure, midodrine and fludrocortisone. After I came home, I started developing joint pain. Started in elbow and pinky on left hand, then spread. I have pain in fingers, elbows, knees, and bottom of feet. Worse first thing in morning. Doctor took me off the fludrocortisone about 6 weeks ago, didn't help. Last week decided it could be the Bactrim, so they took me off that as well. So far, no changes. Fingers do swell somewhat overnight. Any ideas? Next step would be Rhuematologist.