One patient with glioblastoma still alive nine years later
by patzy319 on Fri Jun 29, 2012 02:18 PM
Hello I am Pat 58 yrs old...Just getting over a lumpectomy for a small cancerous tumor...radiation..feeling good...for the past 3 years my platelet count has been high. I passed this info to my oncologist and upon getting a neuclear test was diagnosed with et. So here I go again. My platelet count was 475 and red cell was normal white cell 11..everything for the past 3 years slightly above normal jak positive...at this particular time he is telling me to wait for treatment...needless to say i am very scared ...my mother died at 72 of leukemia...i have a history of cancer...I just need some input here...my GP and breast surgeon said get a 2ndd oppion..but if you get neuclear and it says jak positive can it be done again? are they faulty...anxiety off the charts
by vmorton1 on Sun Jul 29, 2012 06:34 PM
Im 19 years old, and was diagnosed with ET at age 11. I am also Jak 2 Positive and have a family history of cancer. After 8 years of having the condition I have finally got over any anxiety around the condition. Unfortunately on most sites the condition is referred to as Leukemia. However what you need to remember is that it is a Chronic form, and therefore it is one you can live with. For the first few years of ET i suffered with migraines, and stomach pains. But now my condition is under control (hydroxycarbamide, and aspirin) I live a normal, happy life, in fact i am training to be a nurse at the moment. I have to say a platelet count of 475 is low for someone diagnosed with ET most people will have counts above 1000 at diagnoses. I am now off Hydroxycarbamide as a trail and my count has gone up to 900 and i feel well.
Any Questions, please go ahead, I maybe young, but I know alot about ET haha.
Best of Luck with everything
by janadilu on Fri Dec 07, 2012 03:23 PM
My daughter is 3 years dianosed with thrombocytosis and platelet count of 599 was reported on last check up.. please direct me what precautionary measures that I need to take..
Thank you for your genuine support .
by boisid on Wed Jan 09, 2013 03:16 AM
Hello all and happy New Year,
For several years now I have been taking 1000 mg/day of hydroxyurea and it consistently keeps my platetlet count at around 350000. Well last year, around Q2 as I recall, my prescription plan was changed from Express Scripts to CVS Caremark. When I received my first 90 day supply of the hydroxyurea I could see that it was a different capsule color and that the generic manufacturer was different.
Fast forward around 3 or 4 months and all of a sudden my count, on 2 measurements, 1 month apart, was around 420000. I brought up the fact that the generic supplier changed and my doc said they certainly have seen changes with a change in generic manufacturers.
OK, I then proceeded to call CVS Caremark and spoke to a poharmacist. He agreed to have in my records that I only get hydroxyurea made by Teva-Barr (formerly Barr Laboratories who was acquired by Teva).
Now, after 3 months or so on the Teva-Barr product my last count, taken last week, was 352000.
So, I wanted to elt you know. I should also tell you that with Rx drugs, the FDA allows plus or minus 10-15% from what is stated as the dosage. So 1000 mg could be as low as 850-900 mg, and there is no doubt in my mind that this is what happened in my case.
I checked with a cycling firend of mine who is both a pharmacist and attorney who deals with regulatory and FDA issues. He confirmed what I stated above as to the plus/minus 10-15% issue, and he also noted that when changing from 1 manufacturer, or manufacturing site, to another it is recommended that a dose response study be initiated.
I hope this is helpful.
by JeanieBeanie on Thu Jan 10, 2013 03:18 PM
Just want to say thank you Barry for your information. I found it very helpful. I am sure this has happened with my dosage and counts as well but never put two and two together.
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