Hello Everyone, I have a double hit high risk MM with 17P deletion and 1Q amplification. I am going thru induction therapy, 2nd line, switched to Isa-KRD last 2 cycles. Before that I was on Isa-VRD for 4 cycles and developed severe eye sties. My STEM cell transplant is expected to take place around Fed 2024. When I started my induction my free light chain Kappas were around 1950 mg/L and M protein was at 2.3 g/dL. I got a really good response intially after being on Velcade for 2 cycles. My free light chain Kappas decreased to 436 mg/L and M protein went down to 1.7 g/dL. The numbers plateaued after that for 2 cycles. The numbers increased when I was put off of Velcade for a month. Since starting new regimen with Kyprolis, the numbers fluctuated in both direction intially but now my ight chain Kappas are at 222 mg/L and M protein wis at 1.0 g/dL. The M protein is at 1.0 g/dL for the last 5 weeks. I am reaching out to you all with 3 questions: 1. Does my numbers look like they are improving as expected? 2. What were your numbers before SCT? 3. Are these numbers expected to be normalize before SCT? Thank you so much for your time!

Cooling caps for ASCT with Melphalan. Success stories? There is currently a clinical trial at Cedars Sinai that is having 100% success with 0-30% hair loss. Saving 70% hair or more. I'm going to City of Hope and can use the cooling cap, but they won't allow the Penguin representative to help me. Only my caregiver.

Can someone tell me what BITE is like? I go in next week for a week at the hospital, getting dose escalation. Subcutaneous shots

I'm grateful to be in remission with MM since transplant 18 months ago and have been taking maintenance Revlimid for 15 months. Medicare Plan D carriers have mostly stopped covering name brand and I'm asking if any of you would share experience with generic lenalidomide. I used a generic in January and was sick for a month and lost 5 lbs, so I've been hesitant to try it again but I may have to. Thanks for any input you can offer.

Husband set to go this month for SCT outpatient. Timeline has been laid out for us and collection should start next week. 2 questions: he was told today that he need NOT be accompanied for collection line insertion on Monday but will need someone to go with him when it is removed. Should I go anyway? Also, he has completed 4 cycles of induction therapy with little interruption to daily activities. Since stopping his treatment medications a week ago in pregnancy for SCT, he really feels lousy for the first time p, especially at night. Is this normal? Thanks.

Hello Everyone, If you don't have insurance or considering changing from employer to ACA/Obama Care you have until Dec 15th. If you feel you are paying too much with employer plan you can still apply to ACA, no matter your income level. Just make sure your providers are in network and check how your prescriptions will be paid. You may find yurself paying a lot less, and in some cases little or nothing at all depending n your income.

Hello Everyone, If you don't have insurance or considering changing from employer to ACA/Obama Care you have until Dec 15th. If you feel you are paying too much with employer plan you can still apply to ACA, no matter your income level. Just make sure your providers are in network and check how your prescriptions will be paid. You may find yurself paying a lot less, and in some cases little or nothing at all depending n your income.

I have SMM since 2017 and prior MGUS in 2014. I see a MM specialist at OHSU every 3 months with labs. My platelets and white blood cells are normal but for the last 6 months my arms have purpura rash. Any bump or scratch turns into long lasting purpura. Both my arms are pretty much covered in it 24/7. I am 53yrs old but my arms look like I'm 90. Anyone else with good platelet counts have this?

Just started Talquetomab (Talvey) about a month ago. So far so good. Had a Car-T transplant at the beginning of the year that did not work. Hopeful this will work and stay effective for a while. Was wondering if anyone else is on Talvey and if they have any side effects. I have the no taste, dry mouth, skin peeling, but also feeling muscle and bone pain. Wondering if anyone else is also feeling any muscle and bone pain. Thanks Bill

I was diagnosed with secondary plasma cell leukemia earlier this year, 10 years after my multiple myeloma dx. I had a good response to one cycle of Kd therapy, while waiting to see if I'd be approved for access to Talquetamab on Compassionate Need basis (it's not yet approved in The Netherlands where I live). I did my step-up in hospital from October 30 through November 7, since release I'm on the every other week injection schedule. Results of labs from blood drawn one month after completion of step-up (and after 1st injection doneas outpatient) found NO plasma cells in circulating blood, and free light chains below reference range. We are thrilled, my husband, my hematology and me! Will need to wait a week for Mprotein results, expecting good news. For me, single agent Talquetamab has shown a fast and deep response against sPCL as well as my myeloma. Praying now that the response will be durable.

Won't allow me to respond...very frustrating..I wanted to comment to a couple people regarding balance..etc with SM Help?