Hello friends. : ) Nothing specific at the moment - just an introduction. I'm Leslie. I consider myself a caregiver and medical advocate for my husband Matt, a 12-year survivor thus far. Currently we're in the midst of big decisions and full calendar of medical appts. It's a particularly stressful time. I just logged on for the first time and read through the posts. It tugs at my heart to see your different but similar stories. It's not easy being a caregiver. In that way, we're all in the same boat. I imagine more like a giant ship! the circumstances are so varied for everyone - maybe it's like we're navigating from different life boats launched from the ship. sometimes on calm waters; other times on rocky waters. I wasn't expecting to delve into a metaphor. ha! but now that I have, I'll say I hope you all get to experience smooth sailing from time to time. maybe even a dance in the ballroom. (now i've turned it into a cruise ship) : ) may we all keep finding moments of joy on this voyage. I went through and "hearted" all the posts/comments. My way of sending out love and respect to each of you. Thanks to Healthtree for providing a space for caregivers!

I had CAR-T on 2/22/23. I did well post treatment with Stage 2 CRS (temp 101.4 and falling blood pressure) on day 7. I was treated with Toci and immediately recovered. My remaining recovery was as expected until Day 40 when I experienced an inflammatory arthritis of my right elbow and knee. It was quite painful and debilitating. I was treated with a short course of steroids and slowly returned to the expected level of side effects. Unfortunately, I have had 2 repeat episodes of inflammatory arthritis since though these have been less intense. I was seen by an orthopedic specialist during one of these episodes and given a steroid injection into the knee that gave relief for 6 days and then returned. I am now being told that I need a knee replacement as it appears that I have no cartilage with bone on bone in the right knee. Prior to CAR-T I have had no arthritic symptoms and no knee issues. It is suggested that the inflammatory arthritis caused destruction of the cartilage. I have been in touch with another CAR-T recipient who had arthritic complaints before his procedure but his arthritis significantly worsened following treatment. He is now scheduled for knee replacements of both knees. I have found very little in the literature about inflammatory arthritis post CAR-T. I am wondering if this occurs more than is presently recognized. Please share your experiences.

I'm new on this chapter, in this group. 11-11'22 diagnosed with MM, I recently understood I've got not-secretory MM. Had immunotherapy; VDT but no transplantation. Got alternative treatments now and take supplements etc. Are there specific things to be aware of and to do so I could stay in remission?

I just received an email from LLS announcing their online financial assistance portal is now live: https://www.lls.org/support-resources/financial-support/co-pay-assistance-program?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=PFA+Portals+Live+-+July+2023&utm_term=Co-Pay+Assistance+Program&utm_id=392324&sfmc_id=330437652

I was diagnosed with SMM (Kappa type) over a year ago, MGUS about 5 years ago. My specialist says that SMM doesn't have symptoms. Meanwhile, I have severe fatigue, terrible low back pain and neck pain, and cognition issues ie, anxiety, focus/concentration, forgetfulness, and word-finding. I'm a LPC and feel like such an imposter due to these cognition issues. Not sure what to do.

I find it so hard. I was diagnosed a year and half ago. Had radiation and chemo but it was interrupted because I caught shingles. I was told I needed a stem cell transplant so I moved from Pennsylvania to Louisiana to be closer to my family. I need help. I am a single mom with kids when I moved to Louisiana I had talk to the doctor before I moved to help me get recommended for a stem cell transplant however because I have non-secretory I was told I was in remission because I don’t have an M SPIKE. I have gone to two other doctors here louisiana I am on Medicaid. It has now been one year with no treatment. I am scared. I am tired. I don’t know where to go.!!! I regret moving but now I can’t move back. I’m just too tired to move to another state. My health is suffering and I don’t know what to do.

I'm hoping healthtree will help with these also-How do doctor's decide on what treatment to use after relapse, esp with so many available now? Also it would be great it we could respond with side effects we've experienced on here so others could be aware? like in a chart type that one can search for under MM meds side effects? I've been told where I get my infusions, "oh we've NEVER seen side effects like those listed in the phamplets"??! yet I read on here or in support group LOTS of us having side effects! And how many of you were actually given "options" about your next line of treatment?

Diagnosed with SMM in August, 2022 but had been having symptoms much earlier that I thought were related to my heart. I've had 3 heart attacks, multiple angiograms and angioplasties, 3 stents, a pacemaker, a TAVR, all the result of heavy doses of radiation starting at 9 weeks of age. I've always been physically active and kept my weight to 127 to 130. I used to run every day but as old age set in I walked 3 miles a day. In March, 2022 I was so exhausted from walking I gave up but thought I was just being lazy. Then my weight started dropping and it ended up at 98 lbs. I knew I was in trouble though I still thought it was related to my heart. Since none of my regular doctors could diagnose it I went to Oregon Health Science University in Portland where I found the Knight Cancer Institute and the amyloidosis/myeloma group. Multiple tests have been run since August and the main thing they've come up with is smoldering myeloma. I shouldn't be seeing any symptoms from SMM from what I read but I do and I'm getting weaker each day. My husband is legally blind and I had been keeping our house up and just didn't have the energy to continue so we sold it and moved into a senior living facility which I don't like but we both know we need it. What's in my future I don't know but I don't like it.

General question: Is there a way for me to see links to all the conversations I participated in? There are several that I was involved with and I'd like to know what responses I've had, going back months. Thanks.

Hello, I had D-VRD induction and ASCT. I am currently on maintenance therapy and cannot tolerate Revlimed so getting off Revlimed and starting Velcade. Has anyone used Velcade for maintenance therapy? If so, what is your experience? The video on Velcade in Healthtree's University Hub states that Velcade is used for induction and relapse with no mention of it being used in maintenance. Velcade's website says nothing about being an alternative to Revlimed for maintenance therapy. I'm very nervous that Velcade is not as effective as Revlimed when it comes to staying in remission. Any relevant experience you have would be greatly appreciated. Thank you!

Hello. New here. Diagnosed last Aug with SMM. Oncologist every 3 months for blood, going up to specialist again this aug. My local doc says the specialist may want to get aggressive, totally overwhelmed. My kappa Free light chains last year were 426 and one year later, 744. I am not anemic. NO kidney or bone lesions, biopsy last aug (showed 30-40% cancerous) and pet scans. Are these numbers high for someone with SMM? and what goes getting aggressive mean... for those JUST STARTING OUT. I cant sleep at night, thinking about what's to come and I feel like a ticking time bomb. Any insight would be so appreciated. Thanks.