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SetyBlue
Multiple Myeloma Discussion • October 5, 2023
Sharing My Great CT-Guided Biopsy Experience
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How common is CT-guided bone marrow biopsy? This was my 2nd biopsy. The first one was the old-fashioned in the doctor’s office, without any sedation, just local lidocaine. This 2nd one was something else. I asked for sedation because 1st one was too painful, and I was just expecting same thing as the 1st but with sedation. I was also expecting to be out like you get for colonoscopy. Well, that’s not how it went. I was really pleasantly surprised. The sedation was very light. I was awake and completely engaged. They just gave me something to keep my anxiety down. It was done with CT scanner. They got several images of my lower back, then used the images to find the best area to insert the needle. It was mostly painless. I thought the whole thing was pretty cool. Here’s a great write up about how to do it, for any one interested: https://www.ncbi.nlm.nih.gov/books/NBK559232/
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DIahanna • Admin
Multiple Myeloma Discussion • October 5, 2023
Financial Coaching & Support Available Here
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For those who don't know me, I am the Financial Program Manager at Health Tree. I present financial webinars the first Tuesday every other month as well as Financial Articles monthly. I am also the Lead financial Coach. So if you need help finding financial assistance for co-pays. deductibles, travel costs assistance, utilities or urgent needs, finding RX expenses assistance etc. Or if you have questions about health insurance, including appeals, understanding your insurance, Social Security Disability, applying and appealing, understanding FMLA and ADA, or anything else financial, I would be glad to assist you. Our goal is to give you the financial tools necessary to help you stay on track in your financial life and not experience financial toxicity. Reach out to the Coach site and request a financial coach. We are always glad to help
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WilliamRise
Multiple Myeloma Discussion • October 4, 2023
Starting Dara, Dex, & Revlimid: Experiences?
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Three years ago I was diagnosed with mgus and the oncologist wanted to start me on drugs right away, I was hesitant to say the least since my wife dies a few years before from Pancreatic cancer and I saw first hand what the drugs can do to you. So I decided to get a second opinion from a specialist over in Portland Oregon. Best decision I ever made, it became obvious that he miss read the test results from the scans. Three years later I now have Active Myeloma based on Light chain increases which are now 129.85 instead of 1.65 and the Immunoglobulin G is low at 440 and the A i a little high 478. The free kappa light chains is 441.5 and the lambda is 3.4. Now they want to start treatment after I have another Pet scam. They are recommending I start with daratumumab and dexamethasone and if I do well than add lenalidomide. Has anyone had this type of experience with these drugs?
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rrepavich
Multiple Myeloma Discussion • October 3, 2023
Our New High-Risk Extramedullary Journey
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Hello, I am Ramel, wife and caregiver to my husband-Wade. He was diagnosed with High Risk- extramedullary, Lambda Light Chain MM. This diagnosis came 9/11/2023 which was 1 day before our 36th wedding anniversary. He started having back pain for about 5-6 weeks then numbness into both of his lower extremities. MRI showed fracture to L5 and multiple lesions along his spine as well as enlarged supraclavicular and retroperitoneal lymph nodes. FISH results just came in and it states "unfavorable prognosis". Back surgery was completed and he started Velcade, Daratumumab, Dex and Lenalidomide today. I am devastated. Has anyone else had a similar story?
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rrepavich
Multiple Myeloma Discussion • October 3, 2023
New High-Risk MM Diagnosis: Looking for Similar Stories
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Hello, I am Ramel, wife and caregiver to my husband-Wade. He was diagnosed with High Risk- extramedullary, Lambda Light Chain MM. This diagnosis came 9/11/2023 which was 1 day before our 36th wedding anniversary. He started having back pain for about 5-6 weeks then numbness into both of his lower extremities. MRI showed fracture to L5 and multiple lesions along his spine as well as enlarged supraclavicular and retroperitoneal lymph nodes. FISH results just came in and I am states "unfavorable prognosis". Back surgery was completed and he started Velcade, Daratumumab, Dex and Lenalidomide today. I am devastated. Has anyone else had a similar story?
Thumbnail for Individualizing Frontline Treatment to Get the Best Outcomes | Xavier Leleu, MD, PhD | IMS 2023
Playlist: IMS 2023

Individualizing Frontline Treatment to Get the Best Outcomes | Xavier Leleu, MD, PhD | IMS 2023

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Thumbnail for Update from IMS on Novel Technologies in Multiple Myeloma | Gareth Morgan, MD, PhD | IMS 2023
Playlist: IMS 2023

Update from IMS on Novel Technologies in Multiple Myeloma | Gareth Morgan, MD, PhD | IMS 2023

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Thumbnail for Using a Single Cell Approach to Define Mechanisms of Progression | Irene Ghobrial, MD | IMS 2023
Playlist: IMS 2023

Using a Single Cell Approach to Define Mechanisms of Progression | Irene Ghobrial, MD | IMS 2023

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Thumbnail for Serial MRD Assessments as a Surrogate for Long Term PFS | Frits van Rhee, MD | IMS 2023
Playlist: IMS 2023

Serial MRD Assessments as a Surrogate for Long Term PFS | Frits van Rhee, MD | IMS 2023

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Thumbnail for Sustained MRD Negativity in Transplant Eligible Patients | Camila Guerrero, PhD | IMS 2023
Playlist: IMS 2023

Sustained MRD Negativity in Transplant Eligible Patients | Camila Guerrero, PhD | IMS 2023

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chocolateMonkey
Multiple Myeloma Discussion • October 3, 2023
Sharing My Positive ASCT Recovery Experience
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To the person awaiting ASCT Ihaf my ASCT in 2009, so this Mar not be timely. I was also very physically active. I did slot of walking while I was inpatient at COH. I made a point of eating small amounts of food throughout the day. I was inpatient for 16 days, and got home and continued to walk Got back on my bike 30 days out and pack to the gym (weight-lifting) as soon as my team allowed me around folks. I wasn't fatigued ever. I didn't relapse until 2014 ( 4 1/2 after my ASCT) All I can say is dx'd 2008 and still here in 2023. Denise H
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audrey • Admin
Multiple Myeloma Discussion • October 2, 2023
Sharing Promising CAR-T News for Amyloidosis
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Hi all! I wanted to show you some really interesting data that just came out about a potential CAR T cell therapy treatment. It's the first one that has been proven to treat amyloidosis successfully! https://healthtree.org/myeloma/community/articles/outpatient-cart-treatment
Outpatient CAR T Therapy for Myeloma Patients - HealthTree for Multiple Myeloma

Outpatient CAR T Therapy for Myeloma Patients - HealthTree for Multiple Myeloma

Learn about the product NXC-201, a CAR-T that overcomes neurotoxicities, treats amyloidosis, and is potentially the first to be outpatient.

https://healthtree.org/myeloma/community/articles/outpatient-cart-treatment
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DIahanna • Admin
Multiple Myeloma Discussion • October 2, 2023
Financial Support: Free Coaching & Resources
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For those who don't know me, I am the Financial Program Manager at Health Tree. I present financial webinars the first Tuesday every other month as well as Financial Articles monthly. I am also the Lead financial Coach. So if you need help finding financial assistance for co-pays. deductibles, travel costs assistance, utilities or urgent needs, finding RX expenses assistance etc. Or if you have questions about health insurance, including appeals, understanding your insurance, Social Security Disability, applying and appealing, understanding FMLA and ADA, or anything else financial, I would be glad to assist you. Our goal is to give you the financial tools necessary to help you stay on track in your financial life and not experience financial toxicity. Reach out to the Coach site and request a financial coach. We are always glad to help
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kealanisierra18
Multiple Myeloma Discussion • October 2, 2023
Experiencing Muscle Pain & Fog After CAR T?
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My husband recently went through CAR T therapy (Carvykti). He is about 4 months post-infusion. He spent 21 days in the hospital with some CRS and HLH. Since being released he experiences severe muscle pain. His strength is not nearly what it was and experiences mild full body muscle pain during the day and at night some targeted intense muscle pain in his shoulders. It doesn't seem to be improving. He is also pretty foggy in the head in the mornings and night with very limited emotions. Anyone else with similar experience? Wondering if it will subside with time or if further treatment necessary?