Hello everyone. I’m new the community. I have Essential Thrombocythaemia diagnosed four years ago. I have been taking Hydroxycarbamide but have had a side effect that results in premature ageing and serious loss of mobility. My consultant has changed me to Anagrelide. I would be interested to hear of anyone else out there with experience of either of these drugs. My platelets are under control but my quality of life has plummeted.
Hi Jella and a very warm welcome to the Community but sorry to hear about your diagnoses.
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. (I have a completely different type of blood cancer).
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Essential Thrombocythaemia ET) support group. This is 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 click on this link> MDS/MPN/ET/PV/myelofibrosis (MF) then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It’s a challenging time for you so you may want to use the Macmillan Support Line is 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.
Hi Jella and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read about the side effects you've experienced while have treatment for Essential Thrombocythaemia.
The online community is divided into different support forums so I'm going to recommend that you join the myelodysplasia and myeloproliferative neoplasms forum, as that also covers ET, and you'll then connect directly with others who have this type of cancer.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
