Your Feed

Filter by
See content from
Back to the latest
Avatar
WilliamRise
Multiple Myeloma Discussion • October 4, 2023
Starting Dara, Dex, & Revlimid: Experiences?
AI-generated title
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?
Avatar
rrepavich
Multiple Myeloma Discussion • October 3, 2023
Our New High-Risk Extramedullary Journey
AI-generated title
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?
Avatar
rrepavich
Multiple Myeloma Discussion • October 3, 2023
New High-Risk MM Diagnosis: Looking for Similar Stories
AI-generated title
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

Video details & playlist
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

Video details & playlist
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

Video details & playlist
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

Video details & playlist
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

Video details & playlist
Avatar
chocolateMonkey
Multiple Myeloma Discussion • October 3, 2023
Sharing My Positive ASCT Recovery Experience
AI-generated title
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