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Essential Thrombocythemia (ET): foods, diet, nutrition?
Blood Cancers & Disorders | Last Active: Sep 15 8:03am | Replies (112)Comment receiving replies
My platelets were 735 at my first visit to hematologist. They currently are 564 and my hematologist would like to get me below 400.
I was not hesitant about taking 500 Hydroxyurea. In the beginning I sometimes had a little lightheaded feeling, daily headaches, and one first ever vertigo attack. I was switched to every other day, brief stop, then Monday/Wednesday/Friday. I am currently taking 500 mg four days a week. I do not get the daily headaches now.
I do not even touch the capsule. I slide it to another small lid, swish water around my mouth, and swallow the capsule with a full glass of water. I make sure I have 64 ounces of fluids to help clear any toxic effect.
I feel like have no choice but control my platelets. If treated you can have a long life with ET.
Eileen
Replies to "@judyar My platelets were 735 at my first visit to hematologist. They currently are 564 and..."
Just a head's up about Hydroxyurea and long term side effects.
I was diagnosed with ET 27 years ago at 39 years of age.
Platelet count 1.5mil
Started treatment with Anagrelide and then was switched to HU after 2 years because of heart palpitations, and was told it would be safer. (at that time, there was no talk of asprin and close monitoring as there is now for asymptomatic people)
Felt fine, numbers in the 500's, a little tired but really very few side affects.
15 years in, I developed a bad case of locally advanced basel cell carcinoma on my scalp. Did you know that one of the long term affects of continued use of HU is skin cancer? Read up on that. Fortunately for me after seeing specialist after specialist with a HUGE range of treatment options, I went for starting with an immunotheraphy cream which miraculously worked.
But I immediately went off HU and started Anagrelide.
Beware of taking any of these treatments long term.
And do not worry so much about being below 400
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All good comments Eileen.
I started on 500 mg hydroxyurea on June 29th of this year when my platelets were at 897. Within one week they had dropped to 790, but around 600 they stalled (I had bloodwork done every week….which was a real drag) so my hydroxyurea was increased to 1000 mg 5 days a week and 500 on the weekend. This eventually brought my reading down to just under 400! I was so pleased that I was finally ‘normal’. So now my haematologist has switched to 500 mg 5 days and 1000 on weekends. I am anxious to see if I maintain my normal counts, but she also cut me back to every 4 weeks for blood work, so next reading will be on Dec 14. But I guess what I am trying to say, is hydroxyurea works! And I think I am one of the lucky ones with few side effects. (Maybe I tire a little more frequently) I also try to exercise 3 or 4 times a week ( btw I am 69 and had a small stroke in April of this year and surgery to remove a blood clot from my carotid artery prior to my diagnosis with ET so feel really lucky that i have no lingering effects)