Essential thrombocythemia

Hi everyone 

I am new to this so please bear with me, I was diagnosed in Ocober 20 with ET (a count of 1250) after a short hospital stay.  It was while in hospital that I was told that 7 years ago, at 49 years old, when I had a TIA my count was 700.  My platelet count has not been monitored during this time? .  I have been on blood thinners since then which has probably been a blessing.  I have been going back to heamotologists over last 4 months and had other blood tests where my count has been between 896 and 1450.  

Due to my history with the TIA they have decided to prescribe hydrxycarbomide.  I went for an appointment this last Monday to go through the side effects and sign consent form.  I have another appointment on 2nd March to get the hydroxycarbomide.   I am very nervous about going on the medication with all the potential side effects.

With the ongoing covid situation and being on hydroxycarbomide have you all been isolating?  will it affect immune system? are we more at risk? have you been offered vaccine?  At moment I think I am more concerned about effects covid may have with ET and being on medication

Thank you

  • Hello Simps65 and welcome to Cancer Chat! 

    I can understand why you are feeling nervous about going on this medication and worrying about the potential side effects. We have detailed information on our website on essential thrombocythaemia which you can read here and you can also find out more about hydroxycarbamide including possible side effects on this page

    It might be worth asking your doctor whether being on hydroxycarbamide would mean that you need to self-isolate and whether it will affect your immune system. Your doctor or GP surgery will also be able to tell you when you are likely to be offered the vaccine. 

    You've come to the right place though to meet others who have been diagnosed with ET and who will I hope be along shortly to share their story with you. They will be able to tell you in particular how covid has had an impact on their condition, whether they have been told to self-isolate or not and whether they have already been offered the vaccine. One recent member who posted about ET is [@CharlieGabrielle]‍ whose thread you can find here. There are a couple of very active threads too on the subject here and here so don't hesitate to respond there too if you wish and ask questions. You can also use the forum search function to look for the term "essential thrombocythemia" which can also be spelled "thrombocythaemia" and you'll find other relevant threads. So you're not alone with ET here and I hope that you'll be talking soon to some of our other members who have been in a similar position especially in light of the current covid situation. 

    Our nurses also have a free helpline if you wanted to give them a call and ask them any questions. You can ring them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    Best wishes, 

    Lucie, Cancer Chat Moderator