Essential thrombocythemia (ET)

Thank you Honeyboney, I tell him to rest when he is tired, but he says he would be in bed all day if he does that. I have told him not to stop the chemo tablets, but I am worried that he will.

Hi Desmum. I am so sorry to hear about the side effects you have had after having the Pfizer vaccine. That sounds awful for you. I am glad to hear that you are back on the chemo tablets and doing well.

They doubled the dose of Hydroxycarbamide 6 months ago which has made my dad feel a lot worse, but has done the trick in lowering his platelets. I wonder if the oncologist would let him half the dose again, as he did seem to manage better on that. The trouble is he doesn’t like to ask, but he is the only one attending his consultations. It is very frustrating. 

It is frustrating you can't go in with him - I decided to ask for a compromise - I asked if my platelets were dangerously high and oncologist said no just higher than they would like them - so I'm on a lower dose that I can have a better quality of life on - after being so ill this summer I decided I needed to be in more control of what's happening to me so I tend to ask more questions now - ET is for life so sadly we have to live with it - I really hope your dad gets some answers to his fatigue - even by reducing the dose just a little may help or they could try him on something else 

Hi was diagnosed a few weeks ago with ET was put on hydroxycarbamide already having mouth ulcers and awful fatigue is that normal so quick x

I didn't suffer from mouth ulcers, but suffer with fatigue still 3 years down the line, however I was extremely tired before given hydroxycarbamide, so I can't be sure if it is the medication. I do find I have more good days than I used to , usually a lie down for a bit makes me feel better. Hopefully you'll feel better soon x

Hi Daisy - I've been on HC for ET for about 7½yrs now - I did get ulcers to start with as my dose of chemo was quite high - however as my platelets been mostly stabilized now the dose is lower - last year I suffered so many ulcers I went on to interferon by injection once a week but sadly it didn't suit me and I became really ill  - so now I'm back  on chemo - I still get ulcers from time to time but nowhere   near as often - hopefully you will have your dose lowered  after a time and that will help stop the frequent mouth ulcers - I find gargling with a medicated mouthwash  and found a product called Medigel that really helps - mouth ulcers are horrid so I do hope yours clear up soon 

Thank you for your reply xx

Hi, I also have JAK2POSITIVE ET diagnosed  6years ago. Have been on Hydroxycarbamide and Aspirin the whole time. Like you, I do have extreme fatigue at times, occasionally dizziness but biggest problem is bleeding at the slightest touch and very thin skin so my legs in particular look horrendous  . I haven’t seen the Haemotologist  since Covid began, just receive phone calls following blood tests, I also shielded for about 18 months which was particularly difficult as I live on my own. Good luck with it all.

Hi I was diagnosed with E.T and Jak2 positive for the past 8 years getting clise to 60 my platelets are very high and are not changing my Hemotologist told me they keep getting higher he wants to start me on Hydroxcy but am too scared as been told it triggers lukemia faster so its like given a black card  dont hnow what to do ,do get dizzy in mornings and chronic pain one day I feel mega strong most once I sit it hits at mo on asprin you seen the only person I saw having like me ,its hard to explain to others what you have when you say cancer its as if hey but you look fine so give up saying miss my running so do other its my theraphy pretend its not me I just dont know dont want to take hydra its not even a cure for E T as there isnt ine sorry long reply hope you ok

Hi Caya I take HYDROXYCARBAMIDE and aspirin and it has certainly helped with reducing my platelet count. It hasn't helped with the fatigue but I do believe that it is really important to try to reduce my platelet count.