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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@eileen11108

Hi Ginger,

I am 79 diagnosed with ET JAK2. My hematologist gave me an information sheet from Chemocare.com on Hydroxyurea. Under care tips it said “to help/prevent mouth sores, use a soft toothbrush and rinse three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 to 1 tsp of salt mixed with 8 ounces of water.” I only do this if I feel my mouth is getting sore. You can print this information yourself.

I do not even touch the capsule. I tilt it out to an another small lid. I swirl water around my mouth and lips before taking HU with a full glass of water.

My hematologist has tried different dosages for me because of headaches. I am presently taking 500 mg on Monday/Wednesday/Friday. I just had a lab and it went down from 528 to 509. I do take a blood thinner for AFib.

Best wishes, Eileen

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Replies to "Hi Ginger, I am 79 diagnosed with ET JAK2. My hematologist gave me an information sheet..."
ttown | @ttown | Jul 9, 2023

Eileen,
Thank you for your kind response and for sharing some great information. I have had no more mouth problems since my oncologist had me back off of the Hydroxyurea for 5 days, then started me back at 3 times a week. My platelets remain close to 500 and we have gradually increased the dosage to 4 times a week. The platelets started at slightly over 600. The only side effect I have had since the initial mouth sores last January, is now I have dizziness when I bend over sometimes, and also some numbness in my feet and legs. I go in two weeks to see my oncologist, so hopefully we can assess these two new problems....neither of which are extreme - just mild.

Loving this website - everyone is so kind,
Ginger

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