Hi my name is Baz. I've been on hydroxycarbamide for 26 years now and I am 68 so I hope to ease people's minds I had my spleen removed in 1995 then my platelets shot up to 1950 but are now about 500. Many thanks 

Hi Baz and everyone

Yes, that's very reassuring, we worry far too much about hydroxycarbamide.

My news is good, in fact I can hardly believe it; I was vaccinated today! 

Also, my platelets have come down at last - 330 - and my dose has been slightly reduced

So far, so good.

Love to all

Hi Sabie

are you still here?!!!

I'm wondering what's happened to us all

Please anyone who wants to, get in touch,

Cheers from Jdog

Hi Ann

Thats very interesting. I too was out camping in North Wales and got rained on the weekend that the Chernobyl plume came over. I was diagnosed with ET by chance 12 years ago, with platelets at 1500. I have often wondered if this was the cause. 

Has anybody discussed the report on the Blood Cancer UK website relating to the effectiveness of the covid vaccines for people with ET who are taking Hydroxycarbomide?

I was concerned to read that although 95% of the general population develop covid antibodies 2 weeks after their first vaccination only 37% of ET patients on Hydroxycarbomide do. 

I have contracted my consultant and asked to be tested for covid immunity (which is more than just antibodies) however he is refusing, says clinical trials are underway & I should shield until they know more.

I fear getting covid with a compromised immune system due to HC more than I fear ET so I am stopping taking HC immediately. 

Hi Jdog

I m still here.

Doing ok how about you? Just had a quick look at Bluetack posting.

Haven't seen the article mentioned must read.

I think Baz ' email said it all about being on Hydroxycarbamide to alleviate any worries for everyone.

Bluetack has thrown a spanner in the works re COVID and hc ?..

Take care

Sabie

Hi Baz

Couldn't find article specifically referring to ET and HC.  
As ET is all about thick blood and blood clots I would get advice before stopping HC. Can you point me in right direction for article please.

I was only told to shield initially here in Midlands and only get brief phone call from a locum every 3months after blood tests.

Take care 

Sabie

Hi Bluetack

One of the moderators suggested I post something.  We would strongly advise you to talk to your specialist before stopping your treatment.  They will be able to talk things through with you and help you weigh up the risks of stopping treatment against any theoretical reduction in the effectiveness of the vaccine or your health risks if you contracted covid19.

Martin

Thanks Martin

I have already had an extensive conversation with my consultant, have to say I have lost all confidance in the advice he is giving. He is refusing to test me to see if I have immunity to covid, ie have the two vaccinations worked? His reason is that he would not know what advice to give when he gets the result! I certainly know what I will do if I dont have immunity, stop taking HC, wait a few weeks & then redo both vaccinations, then wait a few more weeks & get retested again & if I have immunity then consider going back onto HC.

Which is what I am going to do but will have to pay privatly for the test.