Essential Thrombocythemia - newly diagnosed

Hi Everyone,

I have just spent the last year having regular blood tests to monitor my platelet count, which has continued to steadily increase. So I have now had a bone marrow biopsy and CT scan, to rule out other diseases/illnesses.

Since last September I have had 2 phone consultations with me local haematology consultant and then last week I had my first face - to - face consultation. During each appointment I have been told what they suspected but not all the results confirmed it. And been told not to worry and even if it was ET - i had nothing to worry about.

At last weeks appointment I was told the conclusions of all my test was inconclusive, that I would probably be monitored to see what happens to my platelet count but that would be it, although my case was going to be discussed at the next consultant meeting.

On Friday I had a letter from the hospital and even though not all results are conclusive the major ones are so i have been diagnosed with ET and need to start aspirin once a day.
I am only 47 and generally in good health, which i believe means my risks levels are low. I am an asthmatic and have always avoid aspirin and aspirin products, so feel wary of taken it everyday. i hope to speak to my GP next week and get some advice.

i would also like to know does this effect when and what covid vaccine I have? Currently I have had 2 astra and 1 phizer booster. I have also had covid twice.

I was just hoping to be able to get in touch with other ET sufferers, so we can share thoughts, feelings and experiences.

Nicole

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Hi @Nicole a great big welcome to our forum.
You show so well how Covid times have changed your face to face appointments and probably raised your anxiety levels.
You have also been unlucky enough to have had Covid twice.
Yes, I think you have come up with good questions to ask your GP next week… I have found consultants are often the experts in their own field, but if you are like me and have more than one condition, I keep on having to remind them of conflicting issues or medications.
I have just had my 5th Pfizer vaccine, but that is because those were the vaccines that my group of surgeries received at the time.
Yes, we have other ET’ers on here and they might be able to share their experiences.
We are here to support you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Please let us know how you get on with your GP.
Look after yourself and be kind to yourself you must be feeling in limbo and that is an anxious place to be.

Good Morning @Nicole,
A very warm welcome to our forum, I’m really glad you have found us. I am so sorry to hear about your recent diagnosis it certainly does sound like you have been through a really worrying time. May i ask how you are coping?
Have you started your aspirin treatment yet? As @Erica has brilliantly recommended it can often be a good idea to note down any questions that you may have so that when your next appointment does come around you are able to have these clearly addressed.
It is however our understanding that the vaccine type/ manufacturer should not interfere with your condition and or treatment on the basis of what you have described. It is also perfectly safe to mix & match vaccines unless you have a known allergy.

What may be important to consider and potentially discuss with your consultant is your risk to covid moving forwards now as a blood cancer patient & required future covid vaccines. Our page here might help facilitate a conversation around this- How to book a covid vaccine if you have blood cancer | Blood Cancer UK
Indeed as you have contracted covid twice you have good insight to how this affects you but as our webpage highlights- Omicron and coping with risk and uncertainty | Blood Cancer UK It is still important to remember even after testing positive is that -

  • People with blood cancer have a higher risk than other people of getting seriously ill with covid, being hospitalised. This is because blood cancer affects the immune system, making it harder for your body to fight off covid.
  • Covid vaccines are less effective in people with blood cancer than other people. This is because the vaccines need your immune system to react in order for them to work.

Please do know Nicole that should you wish to talk anything through our support team are only a phone call or email away- Blood cancer information and support by phone and email | Blood Cancer UK.

Take Care, Lauran

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