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

I have a friend in Boston who was diagnosed in 2011 the same year as me. She just sent me a desperate note regarding MM in her Central Nervous System. Does anyone have ANY thoughts on this? Here is her note: ….’my myeloma went up into my central nervous system in Sept. They put a shunt in my brain so it keeps it out of the brain but it’s gotten into my spine so now I can’t walk again. :( I’m starting radiation today. We’ve tried Teclusimab but it won’t go after central nervous system. We are going to try one. Last goodie called Talvey . ….. Do your Healthtree peers know of any new ones that are working on CNS central nervous system involvement? I have to figure it out within the next few days as everything moving fast. Car T worked awesome on the blood… But not on the central nervous system.’

It’s Motivation Monday! Share something that helps motivate you through your myeloma journey and more!

This article applies to AL and ATTR Cardiac Amyloidosis. https://www.medscape.com/viewarticle/998193?form=fpf