Certain conditions make it harder to reliably detect tumors, study says
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.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.