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Essential Thrombocytosis symptoms

Blood Cancers & Disorders | Last Active: Feb 13 1:02am | Replies (170)
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@nohrt4me

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have as many clotting incidents as people with JAK2. CALR patients also cannot progress to polycythemia vera.

But less is known about this mutation and how it affects overall health and longevity.

Hoping you can get some answers about the enlarged joints. Glad that is not painful for you.

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Replies to "Welcome to the CALR club. Me, too. Good news with CALR is that we don't have..."
1pearl | @1pearl | Feb 2 4:16pm

Hi again nohrt4me,

I know you and I both are CALR positive, but did you get any other mutations listed on your genetic testing? I have two others that are concerning as percentage still in the 40s. My CALR is 49%. So you know exactly what this all means?

Hope you are enjoying your weekend.

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lynnebgraham | @lynnebgraham | Feb 2 5:33pm

Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this out by googling it. I have had it for over 16 years, would have thought someone would have mentioned this fact. Neither has mentioned a mutation of JAG2 or CALR. I feel I have been left out in the dark maybe because it has been under control for all this time with Agralyn. Have prior to Christmas had my first bone marrow test to confirm ET. Now on a different path with Hydrae, this seems to be okay 1 tablet a day with 1 asprin. Just waiting for blood tests, was 1155 then 735 so it is going down. Only side affect is very tired, otherwise all good.

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