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Thanks. This is good feedback especially since your situation mirrors mine. It would be great to be able to see my Hemo every 6 months. This year I’ve been seeing her on average every 4 weeks due to my platelets count being all over the map.

I’ve never heard of Errivedge.

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Replies to "Thanks. This is good feedback especially since your situation mirrors mine. It would be great to..."

@jp2000 Errivedge is for advanced Basel cell carcinoma not for ET. I ended up using an immunotherapy cream for 6 months instead of this very powerful (and expensive) drug and that eradicated my skin cancer! so glad I listened to my gut.
There is a lot of ‘woe is me’ on this site in regards to having ET because a few years ago some organization attached the word cancer to it. That word freaks everyone with ET out. When I was diagnosed in 1999 it was called a blood disorder. Attitude is everything when it comes to your health issues.
I’m still here and healthy after a diagnosis almost 30 years ago. We all have our individual health journey filled with highs and lows

Btw I have bloodwork every 3 months so I am monitored remotely throughout the year via Telemedicine.
I realized I am one of the more fortunate ones with this diagnosis- just want to shine a positive light for those with this ‘disorder’ 😊