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Thrombocythemia and need neck surgery: Will surgery make it worse?
I was recently diagnosed with Thyrombocythemia my platelets are over 900. The Dr. put me on a low dose aspirin. He said when it reaches over 1000 he will put me on a drug. I’m also having neck surgery on Oct 3rd on C4 thru C7. I’m scared, will the surgery make the Thrombocythemia worse?
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I was diagnosed with the same jak2 positive and my platelets are in the 500’s. Hydro was prescribed, and I decided not to take it. I am currently on a low dose aspirin and monitoring my platelets. It’s very discouraging that diet is never brought up as an alternative. What are some of the foods that help lower platelet count?
I’m 78 and am feeling good which is why I don’t want to start on hydro.
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1 ReactionFor those of you who with ET who are eliminating certain foods, could you please list some of them? I would like to get off of Hydroxyurea, but both my oncologist and PCP say no. I also take a 81 mg aspirin daily. My platelet count has been running 434-480.
Thanks. Linda
Thank you for your response. It is encouraging to hear that your platelet count went down w/o taking the hydroxyurea. I think doctors/hematologists must go by the book, with the limited knowledge they have re. this rare type of blood cancer (ET). However, ultimately, it is our own individual decision (and right) to do the research, and then decide what to do with our bodies. Each person, and circumstance, is different. Wishing you the best of luck and many long, good years ahead!
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2 ReactionsHi, Christinele, I am curious as to how long ago you were diagnosed with ET. To help with your question: According to Google search, foods that reduce platelet aggregation are dark chocolate (yes!), garlic, ginger, onion, purple grape juice, tomato and wine. As I mentioned in my reply to arti4, we each have a choice as to what we put into our bodies. I, too, am at present feeling healthy and happy, without symptoms, so will refrain from the hydroxy, but will monitor my platelets as usual. Wishing you many more good years ahead!
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1 ReactionI think people have every right to treat their ET the way they want. I also know MANY doctors are not using up to date info and guidelines on ET treatment. This is a disease that gets little attention from researchers or empathy from conventional medical practitioners.
That said, dietary changes will not lower platelets reliably or sufficiently to reduce ET clot risk. If we could control cancer with chocolate and red wine, we'd all be doing that.
If you are finding research on alternative treatments, it would help us if you could please list your sources so all of us can evaluate the credibility of your info for our own purposes.
Thanks.
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3 ReactionsI am on HU, at one point my count went up (maybe 600) and Dr wanted to increase my HU, I resisted ...said let's wait for next blood work......and sure enough it went down into normal range without increasing HU dose
Thank you, wishing you good health as well. I was diagnosed December 2022. Platelets are staying in the 500’s. My physician wasn’t pleased with my decision, but at this point I need to do what I feel is best for me.
It was interesting he never said anything about diet and yet when I went to my optometrist he mentioned that I should eat spinach and salads in moderation!
He said to keep greens to a minimum!
I’m a 71 yo female in good health. My count was initially in the 900s by the time I was tested and diagnosed. Prescribed 500mg/day. I got a second opinion. We dropped dosage to every other day. ~45 days later my numbers came down to about 800. I’ll have another reading ~45 days later. Side effects: hot flashes 🙁 again) and I have noticed itching on forearms—tubing alcohol fixes it.
I've had essential thrombocythemia symptoms for 15 years now. I'm 70. To the best of my knowledge any surgery will make your platelet count go up at least temporarily. I've been on Hydroxyurea and baby asprin from the day of diagnosis. I started with 500mg and it's been 1000 mg for at least 5 years. I also have degenerative disc in my neck and lower back. I don't think anyone with this disease should have surgery without a specialist for uncontrolled bleeding and guaranteed placement in a rehab facility for at least two weeks. Also a phlebotomy will bring that count down immediately. I see my Hematologist twice a week for intravenous immune support and a cbc is taken every other week. if it's high i'm given a phlebotomy which will take the count down immediately. I would have nothing less than a hematologist that's treating me, a neurologist and a specialist in uncontrolled bleeding during any surgery. The disease can be managed very well with good diet too.