My ET was diagnosed after I fell and broke my wrist very badly. Blood tests were taken before surgery and my platelets were very high. At first it was attributed to the trauma but they continued to rise. My GP was very concerned and made an urgent referral to the hematology unit. I have had a bone marrow biopsy, ultrasound, MRI and about to have another MRI as there may be a tiny clot in my portal vein. But I have not had all the results yet. So I have not had a definite diagnosis yet but have been put on Hydroxycarbamide to bring down the platelets and they have come down a little.
In 2006 I was dx with follicular non Hodgkin’s lymphoma, which is supposedly incurable, but have been so lucky with that. No further treatment since I finished 6 months of chemotherapy. The difficulty this time is the knowledge I’ll have to be on this chemotherapy for the rest of my life. That is so daunting!
And covid does not help! I cannot have my booster shot at the moment until the haematologist is happy for me to have it. I look forward to reading your stories and sharing our experiences.
Hi Michali and welcome to this corner of the Community. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have ET but was diagnosed way back in 1999 with a rare but treatable type of skin NHL Stage 4a and like your original FL diagnosis it’s incurable.
This Group has just been set up over the past month but there are a few folks joined recently.
I have talked with a few folks both on this community and at my Maggie’s Centre Heamatology Support Group who have ET and had all been through Stem Cell Transplant as I have and are doing great so lots of hope.
