Now in 5th year of treatment for Essential thrombocythemia - medication is hydroxicarbamide.
Would be interested to learn how people are finding this condition is developing over a period of years & what physiological effects are noticeable .
In my case there is the usual issue of balancing platelet control with damage to white cells.
Now I am being told there is additionally a worrying reduction is the effectiveness of my immune system.
How are others finding their condition is developing over a period of years?
Are there any physically debilitating effects?
Hi leopardracing and a very warm welcome to the Community but sorry to hear about your Essential thrombocythaemia (ET) journey.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot although I have a completely different type of rare blood cancer so do understand the challenges well.
The New to Community is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Rare Blood Cancers support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below
MDS/MPN/ET/PV/myelofibrosis (MF)
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Do get back to me if you need further help navigating the community.
