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Fri, Apr 5 3:39pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Yes, I have read this and also things like Shitake Mushrooms. I asked Haematologist and he dismissed that in a huff. For me, I don’t see why foods would not help, since diet seems to affect health in general. If there is a chance foods help to lower platelets..I think that beats taking huge amounts of Hydroxyurea. You bet I eat shitake mushrooms etc.

Fri, Jan 4 1:35pm · Essential Thrombocythemia in Blood Cancers & Disorders

@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.

Jun 16, 2018 · Essential Thrombocythemia in Blood Cancers & Disorders

A bit more tired than usual, running to bathroom (bladder) a lot. Not sure what long term effects may be.

Jun 16, 2018 · Essential Thrombocythemia in Blood Cancers & Disorders

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.