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@loribmt Thank you so much for your encouragement and sharing the link to this interview. While reading your story and your particular view on life I was absolutely exhilarated. I particularly perceived real wisdom and exactly this is the kind of attitude I am craving for. To be able to support every single person in the community with so different outcomes and experiences in there cancer journey is remarkably attentive and compassionate. Thank you 🙏 so much for your perspective on life, the importance of cherishing every moment is crucial . The wide range of hobbies you follow up additionally to your engagement in the mayogroup is incredible, I am impressed 🤩.
Yes I am from Germany as you have guessed and honestly it is a pity that i am not able to express my appreciation and thankfulness fully because of the lack of my vocabulary, however I am working on it. Btw can you elaborate on the importance of the VAF level and the the impact of the development of ET and I am interested once more in your opinion about Ropeginterferon. And what do you think how likely it is to that ET progresses into a fibrose and what are the determining factors for that. And what do you think about a realistic life expectancy?

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Replies to "@loribmt Thank you so much for your encouragement and sharing the link to this interview. While..."

@birgitr dear, My goodness, you should have no hesitation using your newly acquired English skills! Talk about impressive. I’d say you’ve mastered the language and express yourself quite eloquently. 🥰. Thank you from the bottom of my heart for your heartfelt response.

I really do try to ‘practice what I preach’. I spent too many of my younger years worried about what if this happened, what if that happened…and none of it ever came to fruition. All that time wasted with worry. Then, later in life, when I actually did face my mortality with leukemia, I dealt with that one day at a time the best I could. Keeping a sense of humor and being as positive as possible throughout.

Changing attitudes doesn’t come over night. It takes practice with daily positive affirmations, switching negative thoughts to positive outcomes, little changes like that. Over a short period of time it becomes natural to have a more genial outlook. ☺️

As for your quesiton about the importance of VAF (variant allele frequency) and the impact on the development of ET…While I’m aware of allele burden definitions and that they may be useful prognostic biomarkers, that way is above my pay-grade. 😅
You have some great questions that warrant answers. So my suggestion is to write these questions down and ask them at your next appointment with your hematologist!

As for life expectancy, we have many members in Connect whom have been diagnosed with ET…from newbies to veterans still living multiple decades later. Each person’s situation is unique to them. So again, longevity questions would be for your doctor to answer.

But if it’s of any consolation, many doctors of members in Connect, including my own hematologist when he and I discussed myeloproliferative neoplasms (such as ET and PV) have anecdotally stated, “The majority of patients pass away with these blood conditions than from them.”
So keeping with my perspective of staying positive and forward focus, I’d say just get about with your life. If something changes, then you’ll deal with it at that time! Your doctor monitors your labs and will watch for trends. Nothing will happen over night.

I did a quick search for all the discussion surrounding ET (essential thrombocythemia) where you can jump into any conversation with other members such as @janemc @nohrt4me @mikecaldwell just to name a few.
Here’s the link to my search: https://connect.mayoclinic.org/search/

Wishing you a lovely week ahead! You mentioned that you teach maths! I expect that you’re a wonderful, well-respected teacher! Sending you a hug!