Blood cancers

Grandma1954, my heritage is also Jewish and Ashkenazi has been mentioned too. This is on my late father's side as his late BiL traced him to Jerusalem.

Sorry when talking about not being hereditary I was referring to DH’s diagnosis of PCV. I now realise you were referring to ET . Got my wires crossed (not uncommon ?)

Welcome Doodle to our exclusive club on GN. Yes, I’m on hydroxycarbamide as well. It’s taken seven years for my hair to thin to this level which is upsetting for me. I can’t see it improving. As far as I can see, it’s going to go on forever. I had a good talk to my oncology nurse on Thursday and she said she could change my chemo to see if it helped my hair but was reluctant (as I am) as I tolerate it so well. I have to keep saying I know it’s not as important as your health but it has a fundamental effect on your wellbeing. My nurse did acknowledge that it makes you feel ill when you don’t feel ill in yourself which I thought means she understood.

I didn’t know about the tiredness so I haven’t felt that or the aching legs, thank goodness. I did have very itchy skin and a lot of unexplained bruising before I was diagnosed. I’m 70 now so I do feel older but I’m fighting looking my age in every way. I have no idea whether it’s hereditary, I doubt it. My parents didn’t have it, I have never known anyone else who has it. My brothers don’t have it so I do think, why me? What on earth made my bone marrow suddenly go mad?

Sorry lucky I had missed the point where you mentioned being diagnosed seven years ago and had thought you had only recently started the tablets. I can well understand your worry about your hair. Even DH is concerned and it’s not nearly as bad for men. I can also understand your thoughts about staying on your tablets. It’s a blessing if you can get something without too many side effects.
DH has had so many serious illnesses in the past, we kind of thought we were doing ok for a while and then this new blood disorder popped up out of nowhere. He wasn’t even feeling ill. As you say, it makes you wonder why your bone marrow suddenly goes wrong. Apart from feeling a bit tired DH does seem to be tolerating the tablets ok which is a bit of a relief.
I hope you keep well too.