Other cancers

Are you affected by a cancer type that we don't have a group for? A group for anyone affected by a rarer cancer type to get together, ask questions, share experiences and support each other.

essential thrombocythemia jak2 positive

Miranda x
Posted by

Hi

New to this. Diagnosed 2015.  Suffered for years with headaches told by doctor to drink more water. Lots of symptoms even a TIA in 2012, still missed the condition. Finally got diagnosed after chronic fatigue and bone pain threatened my job as community carer, found brilliant doctor who took action. Almost 10 months before I got to see haematologist. Taking 500 mg hydroxycarbamide each day and aspirin. Side effects, weight gain fatigue late in the afternoon, brittle hair although I am over 60, sweating headaches have gone though so that's good.  Biggest struggle is work can't retire yet, and I have arthritis in my hip and neck, so pain levels can get high.  Recommend trying mindfulness especially at night, don't sleep well. This condition has changed my life, I feel under threat all the time it's my monster under the bed.  trying to make people understand how it makes is a challenge. Been trying to get manager to understand it but it took a letter from my doctor to get her to change my working hours so I do get exhausted. Hope my story helps others. You are not alone xxx

Dreamthief
Posted by

Hi  

Welcome to the Mac Community - not a club anyone actually wanted to join :(

MP's re quite rare so unfortunately there are not many members who are diagnosed with Myeloproliferative disorders.

I carried out a site search for ET and found these posts that mention it you could have a look through and possibly get into contact with others affected by this by replying to any of those messages.  There is a Macmillan info page here about ET and also this chemo info page for Hydroxycarbamide.

A lot of members have found the MPN Voice.Org website helpful as it specializes in ET PV (also covers Jak2 etc) and other similar disorders.

If you type MPN into this groups search bar it will bring up any other posts that mention it for you to check out while you wait for other ET member replies.

Hope this is of some hlep for now, take care, G n' J