Anyone with High Risk Multiple Myeloma on their first line of treatment who switched to Pomalyst from Revlimid during maintenance? If so could I ask why? Could not tolerate revlimid? Did not get a deep enough response from induction/consolidation? Wanted a more potent drug in maintenance in order to extend their remission? Experienced an increase during maintenance and used Pomalyst to bring numbers back down?

Anyone with High Risk Multiple Myeloma who switched to Pomalyst from Revlimid during maintenance? If so could I ask why? Could not tolerate revlimid? Did not get a deep enough response from induction/consolidation? Wanted a more potent drug in maintenance in order to extend their remission? Experienced an increase during maintenance and used Pomalyst to bring numbers back down?

Hello, glad to join the group. (Thanks Audrey!) I'm 52 now in 3rd relapse, doing well overall. Diagnosed at age 40 in 2011, stage II, 70% in marrow, standard risk. Seven cycles of VRD put me into CR. No transplant due to liver issues. Stayed in remission for 6 yrs without maintenance meds. "Watch and wait" was recommended in 2018 when M protein reappeared as it was a slow progression. In 2021, symptoms were minimal and BMB showing only 20%, but this time showing quadruple hit (high risk). Started Dar-Kypr-Dex, achieved MRD after 5 cycles. Collected cells for future use as liver issues had resolved. Stayed on this for 20 months. Then had sudden, aggressive, painful relapse in Jan 2023 - no M protein detectable but kappa FLC shot to 1400+ in one month. So now it's converted to light chain MM. Started Empliciti-Pom-Dex with immediate response and back in remission. All symptoms resolved except still having numb chin/gums/mouth. Doctors are stumped about that as scans in January were negative. Personally, I married with 4 adult kids age 19-27, 3 still at home. I work part time as a nurse. After the aggressive relapse scare in January/Feb, my main desire currently is prioritizing my own self care and spending time in important relationships. Also, I'm learning/exploring the mind-body connection in how our thought life affects our physical health, good or bad....trying to battle this on all fronts. Grateful for 12 yrs with MM so far with a fairly good life. Looking forward to learning from each other in this group =)

Hi All, I have high risk MGUS/SMM and wondering if there is any info out there related to having knee replacements? This may be a silly question but would this impact/ tax my immune system to have foreign objects as knee replacements in regards to making me progress or be more likely to progress? I have been stable for 5 years since Dx. I am trying to locate any studies related to this but not much on MGUS progression.........

Hi All, has anyone had this happen? I've been taking the Dex (steroids) for over a year, except about 2 months. Got off last year, then back on now for maybe less than, or year. And same as then stopped again about 6 weeks ago due to violent, sexual, nasty nightmares. My treatment is the Dara, still Dex once month when I see oncologist vs. the every week I was doing, and couple others meds, I forget. Ant thoughts on the Dex? Now program has to change which it does about every 5-6 months due to elevation in protein. Now he wants to add the Pomo pill. Any thoughts on effects of this pill? Responses are appreciated. Thanks. I don't know if I'll do the Pomo. I won't keep chasing or trying programs. Don't like effects of treatment. Thoughts? Thanks. Margie. God is my healer laughing!

The 2nd Annual Black Myeloma Health Virtual 5K/1m Awareness Event is a little over 3 weeks away. If you haven't registered, don't wait; sign up today and invite your friends to join you on August 12th or 13th. Since this is a virtual event, you can participate at your convenience on either day and do whatever activity suits you. You might consider riding a bike, taking a hike, going for a walk, running, swimming, using a treadmill/stationary bike, walking in the pool or the park, or even marching in place. We'd love to see pictures of how you participated in the event. Each participant will receive a Black Myeloma 5k T-Shirt and wristband. Register, create, or join a team at this link: https://give.healthtree.org/event/2023-bmh-5k-1m/e482029.

Hi, I have been on Darzalex faspro for just about 2 yrs. MY FREE KAPPA LIGHT CHAIN numbers have been creeping up and are now in beginning abnormal range. I had labs done today and am waiting on results. Doc says if numbers WAY up then she would like to keep me on DARZALEX but go back to the beginning protocol of 9 weeks of WEEKLY then 6 Weeks of BI WEEKLY then back to monthly which is what I am on now. Has anybody gone "back to the beginning" with DARZALEX??

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.