10 years on - and good news!

I’ve been on tablet based chemotherapy (Imatinib) for exactly 10 years today, after being diagnosed with Chronic Eosinophilic Leukaemia/Hypereosinophilic Syndrome (FIP1L1-PDGFRa mutation) in 2012. There’s no cure, and the side effects of the both the illness and the chemo have been my constant companions along this often difficult journey. But as my wife, and rock Fiona tells me regularly - I’m still here!

Since Christmas, my chemo dose (which was reduced from 5 to 3 times a week in 2015) has been increased to daily to try to get on top of increasing symptoms which have been slowly but surely getting in the way and ruining my quality of life, due to a continuing increasing trend in my serum tryptase level.

Having felt increasingly better in myself since March (despite an increase in chemotherapy side effects), and being cautiously optimistic, today my hematologist confirmed what I had hoped and told me that my blood tests are ALL are normal (Tryptase has dropped by 40% and is just inside normal limits) and residual disease tests all negative!!!

That’s the first time in 10 years - absolutely chuffed to bits.


Oh @BHPenfold what absolutely brilliant news especially on your 10 yr on treatment anniversary.
Thanks for letting us know, it is really appreciated.
I think you and your wonderful Fiona deserve to celebrate and really push the boat out.
You have really made my day too.
Absolutely chuffed to bits says it all!!
Look after yourselves.


And I’m chuffed to bits for you! I hope you are planning to celebrate soon!


What fantastic news. Great for other people in your position to jave a good news story.


This is totally amazing! Thank you for sharing :heart:


It’s always great to hear of people beating the odds and being so positive about life. Really cheers me up when I’m having a bad week like this week. Good luck to you @BHPenfold !


Greate to hear a good news about LEC/HES issue. I have HES and i use imatinib as well. I have 9 month from diagnostic but i get all values in range after 4 months. I will be very courios to can get in touch for shareing experience.