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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
I am 65 years old and seem to be a rare male here. Not surprising since Essential Thrombocythemia affects twice as many females than males. Also I guess most males are not big on 'sharing'.
I was diagnosed with ET JAK2 in June following routine blood tests. I have already been taking 100mg of aspirin daily for a couple of years due to my family history of cardiac issues. I have not had a bone marrow biopsy as my haematologist said it would not change the current treatment though I may have to have one down the track depending on my blood results.
Looking back, I have had intermittent headaches for no apparent reason and assume now they were ET related. Who knows?
I am grateful to you all for your openness and honesty and appreciate your comments and suggestions.
Replies to "I am 65 years old and seem to be a rare male here. Not surprising since..."
Welcome, Gary -- we're glad you're here.
My amateur guess is that it's our platelet-heavy ET blood that causes the frequent headaches. I'm have fewer headaches now that HU's brought my count down into the 500s. Headaches are the second-most reported problem with ET (fatigue is the first).
Somehow it's good to know we're not going through all this alone!
Gary, for muscle pain (headaches too), I get relief from lidocaine. Whether delivered via spray, ointment or patch, lidocaine absorbs into the skin. It creates a cool, tingling sensation that occupies the nerves, muffling pain.
Spraying the back of my neck helps with headaches. A patch gives hours of relief when my back is acting up.
An oncology nurse assured me that lidocaine doesn't interfere with aspirin. Hope you'll hear the same from your doctor!
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Hi Gary. You’re right, statistically women do appear to outnumber men with ET cases. So, welcome to Mayo Connect where you can add the male perspective to this blood condition of having elevated platelets. 😉
It looks as though you did have positive results with a defect in the JAK2 gene, which can cause myeloproliferative conditions like ET. Often the first line of treatment, to avoid potential side effects of too many platelets, is a daily aspirin. Fortunately you were ahead of that game with your aspirin regimen already in place.
Now that you’ve been diagnosed, how often will your doctor want followup blood work?