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?

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

Just thought everyone should be aware of an investigation by the FDA into CAR-T and a possible correlation to T-cell malignancies. “FDA is investigating the identified risk of T cell malignancy with serious outcomes, including hospitalization and death, and is evaluating the need for regulatory action.” https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/fda-investigating-serious-risk-t-cell-malignancy-following-bcma-directed-or-cd19-directed-autologous

Hello and thank you for allowing me to join this very necessary group. First, I want to wish each of you a speedy recovery and I will pray for you daily. On November 16, 2023, my life changed with a cancer diagnosis. I was diagnosed with Multiple Myloma at Stage 1 at the Cleveland Clinic. The big issue with MM is bone pain, especially on the spinal cord. This pain has hit me extremely hard. There are some days I can hardly function because of the pain in the center of my back even with high potent pain medication. I am working with a palliative care who is managing my pain. Now that they have a diagnosis, their treatment will be targeted. I do see an oncologist radiologist this coming Tuesday he will be targeting two of my lesions with radiation; especially the T-8 which is the largest lesion and causing me the most pain. I will also begin Revlimid tomorrow and chemotherapy injections next Friday. I want to say, that my oncologist and his team were very compassionate and informative. I actually felt relieved and confident when leaving the cancer center at the Cleveland Clinic. I was told multiple times that my immune system will be compromised and it is critical to try and maintain a smart style of living. Mask wearing, stay away from large groups, constant handwashing, etc. They also said do not stop living. This will be difficult since I am a big 🤗 hugger, social and love hosting family/friends at our home. I want to close by saying that this group is a blessing and I will visit and comment daily. I want to give my love and thoughts to each of you. I want to say that I am going to beat this cancer’s ass. I want to thank my family and friends for being my biggest cheerleaders. And finally, I want to thank God for walking on my side throughout this process. Trust me, I feel his presence each and everyday. ❤️❤️❤️

Hi, I was wondering if there is a standard for high risk MM after SCT for staying in remission? It seems when I search this up on the internet it is around 2 years and CAR-T even less. Can anyone share what they seem to be hearing/reading as a standard for remission after these procedures? I am in remission now from a SCT at 2 years. Thank you! Kathy

Dear Friends, I was diagnosed with MGUS in 2015, then watch-and-wait light-chain SM, with labs every three months. MGUS was discovered when presenting with skin sensations and balance issues, which have persisted, the balance problems getting worse, so that I now use a walker and cane. Other than old age, 85, the source of the imbalance is a mystery. Brain and ears have been imaged and Parkinson's has been ruled out. My understanding is that smoldering, like MGUS, generally has no physical symptoms. I'm wondering if you have heard otherwise from medical sources and whether you have balance issues that have been attributed to smoldering myeloma. I know I have to live with the mystery (and the falls and near-falls), but I'd love to expose SM as the culprit! Thanks much for reading and responding.

Hi, just wondering what some numbers look like for SMM diagnosed patients on this site. My FLC ratio differs significantly depending on what FLC assay test is used (freelite vs n-latex). Anyhow I am IGG Lambda, my paraprotein is at 20 (2.0), Lambda/kappa 419/9 (freelite assay) or 2020/9 (n-latex assay) and BMB 20%. Do these numbers look similar to those patients diagnosed with SMM? Has anyone else out there had such variations in the FLC ratio numbers based on what blood tests method is used. Babsy (Sydney / Australia)

I am 73 and they keep asking me about Stem Cell Therapy. I had Mesothelioma in 2012, did Chemo and have done well. They told me, I would only live 18 months. So, I was told I am not in the danger zone, so why would I do SCT. I am so confused!! I’ve been praying but, have not gotten an answer. All of this chemo concerns me!! Just venting but, it difficult to talk to my husband about it. One adult child says, do it!! The other one says, I’ll support you whatever you do. I belong to a group on FB who have not done SCT. MM is crazy!! There are so many components and so much to learn. Still venting!!!

I would like to kick off a 'Weekly Win Wednesday' post where we can all share our wins for the previous week. I will add my win in the comments below. All small wins lead to big wins