I’ll take your suggestion any time compared to the way the way the nurse handled my diagnosis! I had never heard of these long medical terms. All I heard was “you live longer”! Thank you! 🙏🏼

I would wait to see what your hematologist has to say. Not sure why the nurse decided that fear mongering was a good idea. I also have ET with CALR and my hematologist never mentioned MF but he did say low risk of transforming to leukemia over the years. Hang in there.

That is nonsense. While CALR has a higher risk of progression to MF than JAK2, most people will do not progress. You will see varying estimates. The type of CALR mutation matters. Type 1-like CALR: MF progression rates in long observational series may be ~10–26% over 10–15 years. Type 2-like CALR: much lower observed progression in some series.. This is just one source. https://www.nature.com/articles/leu2015277

You can dive deeper into the literature on this if you wish. There is good data on this topic. Be sure to talk to a MPn Specialist for reliable information. Most doctors, including many hematologists, have little experience with MPNs.

🥰 Thank you so much! I’m so happy for you! I’m learning so much from people who are living it! Can I ask if you’ve ever experienced symptoms of numbness in hands and feet?

I was diagnosed with ET in 2003 and had a biopsy in 2010. It turned out that I have MF grade 2. When I was informed by my hematologist I, of course, went home to google it. I was shocked to read that it seemed to be a fatal disease. However, for me it turned out to be a false alarm. For at least 16 years there has been no progression. My hematologist says that ET caused by CALR mutation is my primary disease and MF is secondary.