Hydroxycarbamide causing Peeling skin, body and legs. Lots of flecks everyday. Having to vacuum the bed every day and flecks get everywhere and cover other clothes and carpets.
Is this usual? I have not used this site before so I hope I'm in the right place!
from Mysecretname
Hi mysecretname and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.
Having talked with others on hydroxycarbamide skin problems can come along, make sure you are talking with your clinical team about this as there may be things they can do to help you out.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Group Title’ and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with ET in it so worth checking.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
