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Anyone else have ET (thrombocytosis) with no gene mutation?

Blood Cancers & Disorders | Last Active: Feb 23 10:39am | Replies (10)
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Profile picture for mmkennedy @mmkennedy

Hi Lynne thank you for sharing your experience. Well I guess we are rare breeds indeed. Best of luck with your surgery in April. It would be wonderful if the procedure lowered your platelets but I suspect that is wishful thinking. 🤔

Thank you and all the best
Meg

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Replies to "Hi Lynne thank you for sharing your experience. Well I guess we are rare breeds indeed...."
janemc | @janemc | Feb 21 7:30am

@mmkennedy

Before your March 5 appointment, may I suggest some homework?

Browse through the ET threads here. You will learn so much about living with this condition. And live with it you can, for a long, long time. Now that you have a diagnosis, you're ready to take charge.

Nobody knows what causes any of the MPNS, of which triple negative ET is one variety. You did NOT do anything to bring this on yourself.

Being better informed means you can make the most out of your time with the oncologist, which will probably be less than five minutes.

Arrive with a list of questions, such as:

- Would low-dose aspirin be helpful?
- What are the risks/benefits of my taking HU?
- If HU would be helpful, will starting with a low dose minimize the risk of side effects?
- What's the best way to take HU?
- When will my next blood test be?

Take a notebook and write down the answers.

We're all on your side. Reach out, we're here to help.

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