Your Feed

Filter by
See content from
Back to the latest
Avatar
Mamazolo
Polycythemia Vera Discussion • July 7, 2024
Starting a Northern CA Support Group
AI-generated title
Hello. My name is Laurie Terzolo and I have Polycythemia Vera. I live in Northern California in Alamo and I would like to start a local group for support. If anyone has an MPN and lives in the area please reach out.
Avatar
CuriousGeorgina
Multiple Myeloma Discussion • July 5, 2024
Radiation for Pain: How Long Until It Helps?
AI-generated title
How long before radiotherapy helps with bone pain? I've been fighting my insurance company to cover radiation for a large and very painful lytic lesion on my sternum, and perhaps naively assuming that the pain would start to lessen right away. But I had the first of five 3DCRT sessions yesterday, and the pain is significantly worse now. For those of you who had radiation to help with pain, how long did it start to work? Days, weeks? Did particular pain meds help more than others? I'm not supposed to apply ice or heat. Thanks in advance for anything you can remember.
Avatar
burgundyDragonfly
Multiple Myeloma Discussion • July 3, 2024
Celebrating a 10-Year Clinical Trial Success
AI-generated title
Clinical Trials work I just completed 124 months of a clinical trial. That’s 10 years 4 months. IT WORKED. I am in remission but staying on the drug Ninlaro to keep me in remission. God is so good to me as are my caregivers, Dr. Stockerl-Goldstein and his staff.
Avatar
Sprint19
Multiple Myeloma Discussion • July 2, 2024
Experiencing Low Oxygen & Shallow Breathing at Night?
AI-generated title
Has anyone had issues with shallow breathing at night and your oxygen dropping? I think after all of my rib damage at initial diagnosis, I now don't do well breathing deep at night. I caught this with my sports watch indicating my oxygen was dropping to 84 intermittently throughout the night. I have a sleep study scheduled. Not sure if it is due to my rib damage or from the induction therapy.
Avatar
fuchsiaChimpanzee
Multiple Myeloma Discussion • July 2, 2024
Persistent Foot Rash in Remission: Anyone Else?
AI-generated title
Hi I am in early stage of remission and for the past 6 mths have broken out in a rash on my foot which will not go away. As soon as it gets hot it itches and breaks out in pimply like sores. Dr had given me creams which helps a little bit then it comes back. Is this common.
Avatar
amberTortoise
Multiple Myeloma Discussion • July 2, 2024
Sharing Carvykti Experiences at UPENN?
AI-generated title
Hello, I am going to be starting the process of CarT with Carvykti & will be going to City of Hope or UPENN. If there is a member / members who have had CarT with Carvykti at UPENN & would be open to talking with me about their experience, I would appreciate it! Thank you