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pennyhedgecoth (@pennyhedgecoth)

JAK2 ASXL1 Mutations: Anyone else?

Blood Cancers & Disorders | Last Active: Nov 24, 2021 | Replies (16)

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@stevehurlburt

Sorry for the delayed response, yes…tested for 25 mutations…I have 8.. including Jak2 and ASXL1 but other than the Jak2… the other mutations they identified are not yet well enough researched to be clear what they mean. I know…how can they know you have it but not know what it means? Well, all I can say is we have a rare disease and it has not been fully researched. I have gotten used to hearing…” we do not know”.
I also tried Pegysus/Interferon injections for 6 Months but found myself sleeping 14+ hrs per day and never feeling rested. Due to NO quality of life, I Returned to Hydrea. Unfortunately, I developed issues with my right foot. Toes started to die…but after Mayo hospitalized me and ran 25 drs from 4 departments in…we did a stent, added blood thinner, and increased my Hydra. Went from a 50-50 chance of losing the foot to latest is it will be SAVED! Mayo saved my foot! It has been a tough 4 months, and my wife has been the best caregiver throughout. We have not had fun thru this but she keeps me focused and we are returning back to Normal.
Challenges with this disease are many and not well understood. But I can tell you at Mayo, you are in Great hands.

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Replies to "Sorry for the delayed response, yes…tested for 25 mutations…I have 8.. including Jak2 and ASXL1 but..."

Welcome back, Steve. Welcome back with both feet! That's amazing that you went from a 50/50 chance of losing your foot to it being saved. Kudos to Mayo, but also to your amazing wife and caregiver. I'm sure she was worried throughout all this too. All the best as you ease back into normal.

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