MATEs FORUM

Hi Katie,

Thanks for you response and continued support.

I'll be sure to keep the group updated.

Hi Steve, Thanks for your considered response. I had a good chat with Warwick, which really helped clarify some of my thoughts. It seems like you and I have different takeaways from hearing his story. Once again I feel that it has highlighted that everyone's MPN journey is individual and no one is t...

Thanks for your detailed response. It is a comfort to see that your research has led you to a similar conclusion, but it has also added to my anxiety. While "watch and wait" is a commonly used treatment plan, the reality is that this approach has significant risks. I see the logic in your ...

Sorry I haven't been around. I needed to take a break from thinking about my disease. My MPN specialist recommended that it's time to do a transplant. Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally healthy, I'm refractory to all current treatments, including the latest CA...

Hi Merry, Mark, and Anita, Thank you all for the warm welcome and sharing your experiences with me. It's reassuring to connect with others who understand the challenges of living with MPNs. Merry, your suggestion about the online Cafe catch-up Teams meetings sounds wonderful—I'll definitely look int...

Hi Warwick, nice to meet you. As tough as it is, I'm relieved to hear that your experience with bone pain mirrors mine. I used to get it in my legs at night, so severe that I had to crawl to the toilet, only to find it gone by morning and back at the gym. Often, when I share this with others, even d...

While the scientific literature suggests that the ASXL1 mutation is associated with high risk, anecdotal evidence from some doctors and patients suggests it may not have as much impact as initially thought. It's been a while since this topic was first discussed. I'm interested in hearing the experie...

Thanks for the warm welcome, Steve. The reason the Pegasus was stopped is because I had neutropenia (too few neutrophils), along with feeling lightheaded and nearly passing out twice. It was hoped that rux and hydrea would be sufficient. I find everyone's stories very fascinating. However, as you al...

I'm 42, married with six children. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that, I stopped the aspirin a...