I have been diagnosed with Essential Thrombocythemia for about 2yrs. I am told I have a rare form of this rare blood cancer so can feel a little lonely sometimes. Looking forward to chatting and learning from pthers on here
I just noticed that nobody had replied to you yet and thought that I would bump you up the list to where you might be more easily noticed.
Sorry, I don't know anything about your type of cancer.
Only 1% of people have my type of breast cancer too and I can appreciate just how isolated you feel at times. Hopefully someone will come along who has more experience of your particular strain soon.
Hi Sandiel, I remember that [@Angiemac]posted a few weeks back about Essential Thrombocythemia, so I'm including a link to her discussion in case you'd like to read it (and she might want to pop back on to chat): Essential Thrombocythemia post.
I also came across this website: MPN Voice, and I wondered if it might be of interest?
Hi Sandiel. I have just been diagnosed with the same rare blood cancer as yourself. I noticed you had already had this 2 years prior to 2017. Are you still on treatment for this at present or are you now clear of it.
Hi, sorry I haven't gotten back to you but rarely visit this site. I hope you are doing well. Yes still on treatment and recently lost weight again and bloods not so good so my consultant tells me. I now have to see him 2mnths and see how it goes. Been told its incurable as its due bone marrow and I have funny shape bones
It's good to hear from you again, although not so good to hear that things are not going so well for you. What treatment are you having at present?
Congratulations on losing more weight. I know how difficult it can be to do this whilst undergoing treatment. I have lost 5 stones in the past 2 years, but am struggling to lose the same again.
