All Thrombocythemia messages

Rocky2005

hi dave, Perhaps your dr. is right of not letting you take med till your platelets goes up to 1500, and if you read some of the articles on the net that still manageable, but for me since when i reach 700t+ counts and my body tends to ache, i take hydroxyurea but in two weeks time my platelets will go down and i stopped taking med..thanks for my hematologist, who let me stop to take the med when my platelets tends to normalize in counts. Take supplements instead rather than taking beer... just concern friend cheers and not to worry on everything not important. rocky

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Maura

First off I am also from Ireland (living in Texas) but no guinness for me tastes like wall paper remover!!! I have just been diagnoses with ET. Since last january my cancer Dr. has put me through a battery of tests that could cause this.I have not heard any mention of that. First off for Lymphoma, anemia, lupus, overian cancer,rheumotoid Arthritis and I did not have any. So by process of elimination he said I will not need a bone marrow as I have ET. My count is 693 now. I feel great no aches or pains anywhere. I do not want Hydrea for the rest of my life. I take a baby aspirin daily and was wondering about Chinese medicine of Herbalists..has anyone tried them? My DR had tears in his eyes and said he didn't want to put me on Hydrea and the other Anagrelide cost over $1100.00 for a hundred pills and the side effects are worse.So has anyone tried Alternative medicine? Maura

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Maura

Judy please read what I wrote to Dave as I explained myself. I am pooped tonight otherwise i would rewrite it but it was meant for everyone. I guess I worded it incorrectly. In the meantime I have a copy of all my tests and my sister is going to give them to someone at Sloan Kettering in NY. They have something new there now. A board reads all the test results and if there is anything that can be done then they send me to that Specialist only if he thinks he can help other than the Hydrea and Anagrelide. You would think they could do something. Wishing you all the very best...Maura

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Maura

Hi all, I was just diagnosed with Essential Thrombocythemia 2 weeks ago. My count is 693. I am only taking a baby aspirin myself to keep them from sticking together. I am from Houston Texas and have been going to an oncologist who is a blood Dr. for a year since my Dr. noticed my count was 619 then. he had me take all kind of tests that could be causing this like..lymphoma, rheumotoid arthritis, anemia, lupus but I didnt have any. If i did and it was fixed then the platelets would go down. I told him I was going to England for 2 months and would think about it when i came back. on the plane over here a flight attendant told me her grandmother had this in the 1980,s and the University of Brighton in UK was doing some study on this disorder where they killed off the platelets with radioactive. It didn,t work for everyone but it did for her grandmother and her count stayed down for 10 years then rose and she went on Hydrea for 13 years and that surely by now there probably are more advanced studies. So i have people researching for me to see where they might be doing something similar. My Dr. said he like to put people on Hydrea at 600 count but i said no way i am too low. looking back on old tests my platelete started to rise about 8 years ago after i had gall bladder surgery. They think that maybe when we loose blood and out immune system tells our bone marrow to make extra platelets it just kept on doing it. An auto immune disease. Hopefully there must be some other way for us rather than take hydrea for ever...Maura

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Maura

Hi all, I was just diagnosed with Essential Thrombocythemia 2 weeks ago. My count is 693. I am only taking a baby aspirin myself to keep them from sticking together. I am from Houston Texas and have been going to an oncologist who is a blood Dr. for a year since my Dr. noticed my count was 619 then. he had me take all kind of tests that could be causing this like..lymphoma, rheumotoid arthritis, anemia, lupus but I didnt have any. If i did and it was fixed then the platelets would go down. I told him I was going to England for 2 months and would think about it when i came back. on the plane over here a flight attendant told me her grandmother had this in the 1980,s and the University of Brighton in UK was doing some study on this disorder where they killed off the platelets with radioactive. It didn,t work for everyone but it did for her grandmother and her count stayed down for 10 years then rose and she went on Hydrea for 13 years and that surely by now there probably are more advanced studies. So i have people researching for me to see where they might be doing something similar. My Dr. said he like to put people on Hydrea at 600 count but i said no way i am too low. looking back on old tests my platelete started to rise about 8 years ago after i had gall bladder surgery. They think that maybe when we loose blood and out immune system tells our bone marrow to make extra platelets it just kept on doing it. An auto immune disease. Hopefully there must be some other way for us rather than take hydrea for ever...Maura

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Jillb

I was diagnosed in November 2006 following a bone marrow biopsy and I was started straight away on the tablets. The only side affects I experience are of getting breathless just from walking upstairs and I am always tired. I am 46 and feel I should be able to do more than this. There are a lot of side affects listed with my medication but the doctors seem reluctant to say whether my headaches are aggravated by it and I don't know what to think. I also take 75mg of Asprin each day. How does everyone else on Hydrea feel? Jill

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Jillb

I was diagnosed with Thrombocythaemia in November 2006 following a bone marrow biopsy and I was started straight away on the tablets. The only side affects I experience are of getting breathless just from walking upstairs and I am always tired. I am 46 and feel I should be able to do more than this. There are a lot of side affects listed with my medication but the doctors seem reluctant to say whether my headaches are aggravated by it and I don't know what to think. I also take 75mg of Asprin each day. How do other people taking hydrea feel? Jill

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Barbara2m

Hi Jill - I started Hydrea about a week ago and also have been tired and it has taken my appetite away. Luckily, that's the way it affects me. I had several people, including my hematologist, say that most of the side-effects listed for Hydrea are for much larger doses than that given for ET (usually 500mg). I am researching nutritional approaches to build up my immune system and positive thinking. There doesn't seem to be many options out there for us special ETers! I did read on some other bulletin board that migraines were a symptom of too many platelets so maybe when you get your numbers down, they will disappear. Good luck and stay positive! Barbara

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Barbara2m

Maura is the treatment in Great Britian that you mention interferon? I have read where that can have dramatic results - however, it is pretty rough to go through and not used much in the US except for cases that don't respond to the two medications available. Your count isn't very high at this point. I hope you are doing some research online. Enjoy your vacation and keep us posted on how you are doing! Barbara

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Barbara2m

Hey Rocky can you tell me the name of the trace minerals you are using? Is that possible on these boards? I am trying to get as much information as possible how to help my body survive the Hydroxyurea!! I found a wonderful book, recommended on these boards by someone with cancer, called "What to Eat Now" by the Cancer Lifeline. It has information about what nutrients your body needs, minerals, micro-nutrients, etc. Very good information. I found a copy at the library and ended up keeping a number of recipes to try. I hope you get this message, as the message I'm replying to is dated last September and I don't really know how these boards work. Anyway, thanks for any information you can provide Barbara

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Thrombocythemia

Essential Thrombocythemia

hi Dave

hi Judy

Just Diagnosed

Just Diagnosed

Affects of Hydrea on me

Affects of Hydrea on me

Affects of Hydrea on me

Just Diagnosed

et - Rocky

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Thrombocythemia

Essential Thrombocythemia

hi Dave

hi Judy

Just Diagnosed

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Affects of Hydrea on me

Affects of Hydrea on me

Affects of Hydrea on me

Just Diagnosed

et - Rocky

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