Essential thrombocythaemia jak 2

Hi Chelslush and welcome to this little corner of the community but sorry to see you joining us.

I have a different type of blood cancer so my journey was rather diffrent but lets look for some of the group members to come along and say Hi.

You can always hit the main Group Title and look through the older posts and as always you can hit the reply tab to put up a reply on any of the older posts.

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Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre tends to run a Heamatology Support Group although these are online at the moment.

Always around if you need further help in navigating the community.

All the very best

Hi, I'm having the same problem as you the pain is constant and I have difficulty walking. My consultant has done a number of tests but nothing conclusive so far. She is now going to test me for rheumatoid, bone disorders or something to do with my protein levels. We stopped the treatment for a fortnight but it made no difference amd my platelets levels raised quite quickly so I'm guessing if if they don't find another reason for the pain , I'll just have to grin and bear it, but it really gets you down, I am also extremely tired and lose my balance a lot. Will let you know if they find the problem

My consultant now thinks that the pain is caused by fibromyalgia but after consulting my gp I Am none the wiser they just give me a link to follow. I don't know if I'm supposed to self diagnose or what all I want is some answers  and a nights sleep . Don't think that's too much to ask 

Hi

I had the same thing after my diagnosis - the platelet count came down and then surged back up again. My consultant said that it was quite normal and a small increase in the dose got it controlled again. I've been stable for 18 months now, except when covid knocked all my blood counts down alarmingly.

I was diagnosed after a blood clot in a leg artery with a platelet count of 1700. I now take two hydroxycarbamide capsules and one clopidogrel tablet each day. My counts are stable and OK for now. I hope your hospital team soon find a treatment plan that works for you.

Hey , 

I’m sorry to hear you’re having so much trouble ! It seems very difficult to get clear answers . I hope you are doing better now . I apologise for not replying sooner .. I haven’t been back on here . 

for the last two years I’ve been on 500mg daily hydroxycarbamide and 1 asprin .. the last 6 months my platelets won’t come down lower than 1000 I’m now on 1000mg hydroxycarbamide and 2 apsrin which still isn’t working … I’m constantly sick , migraines and in so much pain with my bones .. constant night sweats . And I’m not getting much answers either 

Chelslush,

your symptoms sounds like myelofibrosis, has your doc suggested Ruxolintinib?, I read many messages of the people it has helped. But it is not so good if you have anemia with the MF as in my case. Worth checking.

 Hey 

my condition falls under this sector , I had a bone marrow biopsy last year to check for scaring but they said it was okay . But because of the way things aren’t settling . they want to do another one to see if scaring has progressed at all 

Hi there.  That is interesting to read as before I was diagnosed with ET I had gone to the GP for tests for fibromyalgia because I was so tired and also had pain.  I’ve been on hydroxycarbamide for three years. Sometimes my legs are so literally painful and achey and also weak I can barely walk (I occasionally use a wheelchair). The consultants don’t really know why this is apart from the usual “it might be the disease or possibly also the chemo” reply. I don’t know if I also have fibromyalgia and just unlucky to get ET as well! Interestingly my platelets have started to rise again this last year. Nothing bad but over 400 for the first time in almost three years. I’ll definitely follow this discussion.

Have you had any information from the MPN forum?  The video on how to manage fatigue was interesting but I think there’s still a lot they just don’t know.

Skaro

Will try and get info from MPN, my count also went up slightly so hydroxycarbamide dose risen by 500mg for two days a week and the other 5 days still on 1000mg coming back down slowly, waiting now to hear from consultant following next blood tests, then will see where we go from there. Hope all goes well for you ! 

Hope you are feeling better soon and they get your count back down, good luck .