I have been a 'browser' here for a while but never posted for personal reasons.
I am 64 (65 next week) and was 32 when I was diagnosed with ET. I think I must have had every treatment available in the last 32 years; radio active phosphorus injections, interferon, Hydrea, Busulphan, Anagrelide, aspirin and clopidogrel to name but a few. I also have an underactive thyroid and take Thyroxine for that.
During these 32 years I have had a very full, active life. Raised two kids (and now look after 4 grandchildren), worked full time and lived a near normal life if a bit marred by leg and foot ulcers, fatigue, bone ache and all the usual aches and pains associated with the necessary treatments and this condition.
Last September I progressed to myelofibrosis and was prescribed Ruxolitinib with Aciclovir to prevent shingles. I also take Anagrelide still to control my very naughty platelets that soar at the most inconvenient times but are always quite high.
I have some very 'funny' tummies, naughty wind and weight gain with this new drug regime but it seems to be helping with the bone pains.
My reason for now eventually posting on this wonderful site is the recent visits to my haematology unit where I seem to be being given conflicting advice as to the next stages.
One consultant wants to 'wait and see' what the new treatment brings in terms of life expectancy and life quality; two others want me to have a stem cell/bone marrow transplant asap. I have a brother who is 60, who was tested years ago and is 100% match but has high blood pressure so they are a bit negative about using him.
I was appalled last week when one consultant told me my life expectancy according to the Dipps scoring would drop to 6-37 months after I reach the age of 65 which is next week! I had been told maybe 18 months to 5 years just two weeks previously. I am having blood cross matched at the moment and have another bone marrow aspiration booked for next week to cross type me to go on the register.
After having years of treatment for my blood problems I do find now that the narrowing down of life expectancy a bit scary and the Dipps scoring quite bizarre.
I understand that we all want to live a good, long life but have first hand experience when a very good friend of mine didn't survive her bone marrow transplant so am armed with a little knowledge of the procedure which is always a dangerous thing! My home life is complicated and I am very busy with the family but seem to be coping well at the moment except for the fatigue so why would I want to undergo a transplant with all it's worries?
Anyone else out there in a similar situation? If so I would so love to hear from you.