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!

As I have diabetes and excess weight in addition to MM, I'm curious about the weight loss drugs. Has any here with MM tried them? What have been the impacts?

Hi! This is my first time asking a question, do I appreciate any response. I was diagnosed with Smoldering myeloma December 2022. My question is have anyone heard of Hypogammaglobulinemia and nephrotic syndrome. This was indicated on my serum protein results.

Hi. I was diagnosed with MM in June 2018 and underwent auto stem cell transplant in April 2019. I have been on maintenance Revlimid (10 mg) since that time and generally doing ok. The problem is that I have had crushing fatigue and get sick very easily since transplant. Has anyone found anything to help with this? I generally eat a lot of fruits and vegetables and exercise somewhat regularly. Thanks!

Getting ready for Car T. I will do collection in a week. Once cells come back (6 wks) I will admit to hospital, so they are telling me mid-May. I am wondering if anyone can share what the chemo is like that they give you 3 days before you go into hospital for infusion. They are saying it is a low dose and manageable, but I feel like that is an overused word. Also I am wondering how people managed through the hospital stay? I know CRS and neurological side effects are main things to deal with after infusion. I am told I won’t be able to drive for 2 months after infusion- yikes! I guess because of the neurological risks? I am 57 yo female, in good shape, I workout regularly and while treatments have been rough overall as I got to the fouth failed treatment, I am managing fine without any major side effects.