Patient Advocate Foundation Co-Pay Relief program has open myeloma fund per an email today. If the scary looking link I copied below doesn’t work, try copays.org. https://patientadvocate.us1.list-manage.com/track/click?u=99dbf78b6e6c0dc9b5ae9adc1&id=7be8b6be6b&e=4447d51ae9

Welcome to another Motivation Monday! Share something that has helped motivate you through this past week. 💪😃

Dumb/noob lingo question: I've noticed the community uses nicknames for many of the drugs. I'm starting DRVd Friday. If I want to sound like an insider, it's Dara, Rev, Dex, and what? Bort? Vel? Velk? Or no nickname? TIA. Tj

I am started Selinexor (Xpovio brand) with Dex as bridge therapy before I have Car T. Does anyone have experience on the side effect profile and effectiveness? We are just trying to keep my myeloma in check for a few weeks as I wait for cells to come back to proceed on car T so only expect to be on it for one cycle (3 wks on/1 wk off).

Hi everyone. I am about 9 mos post stem cell transplant and am still experiencing a lot of memory issues. Mostly, it’s not retaining very detailed things (like financial numbers) and completely forgetting conversations with people ( I forgot I met someone who I’d met a week earlier, I forgot that I conducted an employee performance review three days earlier, etc). Any information you could share about the duration of memory loss and anything that could help would be so welcome. Thank you!

Not sure if I’m officially “newly diagnosed” but it looks like I’m moving towards it. After a basic blood test for my annual physical in February my primary care doctor saw numbers he was concerned with and ordered a deeper test. The results showed IGM (18), IGG(2779), IGA (11) numbers way out of range, as are my Free Kappa (5.71), Free Lambda (.45), and the ratio (12.69), so he suggested I see a hematologist. Yesterday I had a blood test which confirmed those numbers, and a bone marrow biopsy I’m waiting on the results of, and next Wednesday is my PET Scan. So with my blood results already in I’m trying to make meaning of what I’m seeing. My appointment with my Myeloma Specialist at Memorial Sloan Kettering in NYC isn’t until next Friday after all the results are in. Any insights from those of you with more on what these blood numbers mean would be appreciated. I’m also thinking the bone marrow results are also a big factor in the diagnosis, which will probably be available Monday or Tuesday. Thanks!

"March is multiple myeloma awareness month- what can we do to bring awareness?" ✅Share information about myeloma on social media with your family and friends. 🗣 ✅Support other patients through supportive groups like HealthTree Connect: 👇 👥 ✅ Educate yourself so you can educate others. Watch myeloma videos taught by experts at HealthTree University.🤓 ✅ Participate in surveys and studies at HealthTree Cure Hub or join a clinical trial. 👩‍💼👨‍💼. https://healthtree.org/myeloma/curehub ✅ Embrace other patients and ask for help when needed. 🫂 ✅ Donate to the HealthTree Foundation for Myeloma and help fund research in myeloma.📥 Thanks for being part of this great, supportive community!

I was diagnosed with MM seven years ago. I went through four different treatments, most recently with Pomalyst (Pomalidomide) and Dexamethosone. Prior to that I was taking Cytoxan (Cyclophosphamide), Dex and Velcade. Several months ago I began to experience moderate hearing loss, requiring the use of hearing aids. Has anyone else experienced hearing loss while taking these drugs?

Hello everyone. Asking a question for my sister. She is on her third cycle of treatment. The last couple of rounds the dose was lowered due to her good response. She will feel pretty good the first couple of days after but then on day 4/5 her stomach bothers her…. Kind of nauseous but more just “blah” and she says. Food doesn’t settle and doesn’t sound good. We have zofran at home but doesn’t seem to help. Has anyone tried compro?

HI! I was diagnosed with Multiple Myeloma in November of 2019, and had an autologous SCT in August of 2020. I achieved CR and am currently taking 10 mg Revlimid, but for a long while, I was having Velcade injections. I stopped them last November as I was having increasing issues with neuropathy in my feet and starting to have some with my hands. My question is about excercise. I do a short workout in my house every morning, 25 min or so, usually some cardio, some yoga or stretching. Then I walk about a mile later in the day. I am having some knee and hip pain that is more than I had previously had. I'm wondering if any of you have had similar issues. Could it be medication induced? Thanks!

Hello. I was diagnosed with MM in August 2020 and after a difficult start with treatment I feel fortunate that I achieved complete remission and have stayed there for a few years now. I have not had SCT but have been on a maintenance regimen of Datzalex and Revlimid. Due to Revlimid side effects (crushing fatigue and neutropenia and GI issues), I’m now off Revlimid and on Dara only, with the expectation that will be the treatment plan indefinitely unless/until I relapse. I’m wondering whether there are others out there who are likewise only being treated with Dara and how that has been going for you, and whether you have any concerns about this approach. Thanks in advance for any input!

Hi all, I'm just a month into my MM journey, and have started on infusion therapy a few weeks ago. I was glad to see the 55 and under group. I'm wondering if anyone here has gone through talking to middle-school aged children about your diagnosis. I have 2 boys - ages 10 and 12, and thus far I have been pretty vague about what I'm going through and just said I have a "blood disorder I'm getting medicine for." I will have an autologous stem cell transplant this summer, so I clearly need to have more of a conversation with them before then. Wondering if this group has anything to share. Thanks!