Essential Thrombocytosis

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RE: Essential Thrombocytosis

by debfrisch on Sun Nov 27, 2011 05:50 PM

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can you tell me what kind of natural herbs and diet you are taking and is it still working for you.

RE: et - Hydroxyurea

by emptyk on Thu Dec 08, 2011 05:14 PM

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On Oct 21, 2011 3:46 AM lancer wrote:

Just thought I would jump in here, because my doc says same as Barry's.  I am male, mid-50s with ET about 5 years, discovered after routine test.  No symptoms, but on Hydroxyurea ever since.  When I started, I said I want only the smallest dose necessary.  I started out with 14 pills (500 mg ea)/ week, which brought platlets down from 1,200 to 400 quickly.  After that we cut back to 7 pills/ week.  In 5 years, my platlet ct has slowly drifted up and so has my dose.  We try to keep the count a little above normal or around 500.  As of today, that now means 12 pills/ week.  Dr. says this is low dose and Hydroxyurea has a long track record of successful use. I also take daily asparin.  Still no symptoms, but wonder how this thing will progress in the next 5 years...?

Just had another appointment with my hemo-doctor. Readings for platelets went up to 700 (while taking 5 pills of Hyrox a week). Now, he has moved me up to 7 pills a week. Very depressed. Have not had a normal range reading since 2008. Each time the doctor checks he increases the dosage. In 2008 I was taking 3 pills a week with avearge reading of 500. In 2009 it was 572 (3 pills per week). In 2010 it was 558 (went from 3 to 4 pills per week). This year it has gone to 700 with 5 pills per week and, like I said, now I will be taking 7. Does anyone know how long and how much a person can take of Hydrox before it becomes detremental to ones health (not a benefit but a harm)?

This is depressing. I get bruises in the weirdest places for no reason at all. Any suggestions from anyone. Like I said...getting down in the dumps over this. Last time my numbers were any where normal was in 1999 (taking no meds) and 2008 (at 488) with 3 pills a week.

RE: et - Hydroxyurea

by daizyjune on Fri Dec 09, 2011 01:16 AM

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hi,

 i get bruises also, never can  account for them?? i take hydroxy  but 2 pills a nite, you are  lucky to not have to take so many...i feel it is def. a detriment  to our health to take them at all..make sure to eat healthy!... ant other side effects? i am  currently without  insurance, so haven't been to my doc recently, talk about depressing!!

RE: et - Hydroxyurea

by daizyjune on Fri Dec 09, 2011 01:16 AM

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hi,

 i get bruises also, never can  account for them?? i take hydroxy  but 2 pills a nite, you are  lucky to not have to take so many...i feel it is def. a detriment  to our health to take them at all..make sure to eat healthy!... ant other side effects? i am  currently without  insurance, so haven't been to my doc recently, talk about depressing!!

RE: et - Hydroxyurea

by lancer on Fri Dec 09, 2011 01:59 AM

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On Dec 08, 2011 5:14 PM emptyk wrote:

On Oct 21, 2011 3:46 AM lancer wrote:

Just thought I would jump in here, because my doc says same as Barry's.  I am male, mid-50s with ET about 5 years, discovered after routine test.  No symptoms, but on Hydroxyurea ever since.  When I started, I said I want only the smallest dose necessary.  I started out with 14 pills (500 mg ea)/ week, which brought platlets down from 1,200 to 400 quickly.  After that we cut back to 7 pills/ week.  In 5 years, my platlet ct has slowly drifted up and so has my dose.  We try to keep the count a little above normal or around 500.  As of today, that now means 12 pills/ week.  Dr. says this is low dose and Hydroxyurea has a long track record of successful use. I also take daily asparin.  Still no symptoms, but wonder how this thing will progress in the next 5 years...?

Just had another appointment with my hemo-doctor. Readings for platelets went up to 700 (while taking 5 pills of Hyrox a week). Now, he has moved me up to 7 pills a week. Very depressed. Have not had a normal range reading since 2008. Each time the doctor checks he increases the dosage. In 2008 I was taking 3 pills a week with avearge reading of 500. In 2009 it was 572 (3 pills per week). In 2010 it was 558 (went from 3 to 4 pills per week). This year it has gone to 700 with 5 pills per week and, like I said, now I will be taking 7. Does anyone know how long and how much a person can take of Hydrox before it becomes detremental to ones health (not a benefit but a harm)?

This is depressing. I get bruises in the weirdest places for no reason at all. Any suggestions from anyone. Like I said...getting down in the dumps over this. Last time my numbers were any where normal was in 1999 (taking no meds) and 2008 (at 488) with 3 pills a week.

I take 12 pills or 6000 mg per week.  Previously took 11 per week.  Trying to keep platlets to a little above normal or 500-600, using smallest dose possible. 

My doc tells me this is a very low dose and that hydroxyurea is an old drug with a track record of successful long-term use in those who tolerate it well, like myself.  Perhaps if you have been taking it since 2008 without serious problem, you are tolerating it well also.

I googled the MSDS (material safety data sheet) for hydroxyurea.  The International Agency for Research on Cancer classifies this drug as a "group 3 carcinogen."  Group 3 is between group 2 - "possibly carcinogenic" and, group 4 - "probably not carcinogenic."  I'm not sure what constitutes a high dose or overexposure, but this may vary in individuals.

Still asymptomatic, but feeling like I am in a holding pattern waiting for something to go wrong and not sure what...

RE: et - Hydroxyurea

by boisid on Fri Dec 09, 2011 04:40 AM

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On Dec 08, 2011 5:14 PM emptyk wrote:

On Oct 21, 2011 3:46 AM lancer wrote:

Just thought I would jump in here, because my doc says same as Barry's.  I am male, mid-50s with ET about 5 years, discovered after routine test.  No symptoms, but on Hydroxyurea ever since.  When I started, I said I want only the smallest dose necessary.  I started out with 14 pills (500 mg ea)/ week, which brought platlets down from 1,200 to 400 quickly.  After that we cut back to 7 pills/ week.  In 5 years, my platlet ct has slowly drifted up and so has my dose.  We try to keep the count a little above normal or around 500.  As of today, that now means 12 pills/ week.  Dr. says this is low dose and Hydroxyurea has a long track record of successful use. I also take daily asparin.  Still no symptoms, but wonder how this thing will progress in the next 5 years...?

Just had another appointment with my hemo-doctor. Readings for platelets went up to 700 (while taking 5 pills of Hyrox a week). Now, he has moved me up to 7 pills a week. Very depressed. Have not had a normal range reading since 2008. Each time the doctor checks he increases the dosage. In 2008 I was taking 3 pills a week with avearge reading of 500. In 2009 it was 572 (3 pills per week). In 2010 it was 558 (went from 3 to 4 pills per week). This year it has gone to 700 with 5 pills per week and, like I said, now I will be taking 7. Does anyone know how long and how much a person can take of Hydrox before it becomes detremental to ones health (not a benefit but a harm)?

This is depressing. I get bruises in the weirdest places for no reason at all. Any suggestions from anyone. Like I said...getting down in the dumps over this. Last time my numbers were any where normal was in 1999 (taking no meds) and 2008 (at 488) with 3 pills a week.

Please don't fret. I take 1000 mg/day which is 14 pills per week. This keeps my platelets in the 350,000 range. I'm sure your doc will slowly increase your dose until the platelet count gets in to the normal range.

You'll be fine.

Best regards

Barry

RE: Essential Thrombocytosis

by hometypist on Fri Jan 06, 2012 08:34 AM

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Hi,

I have been diagnosed with Essential Thrombocythemia in January, 2011.  I have been prescribed with Myelostat which is a hydroxurea capsule 500 x 2 times and have been taking it for the past 1 year and have found that my platelets from a 1250 has come down to 450 in the month of October, 2011.  I have heard that Anderson's Concentrated Mineral Drops which comprises of all minerals is useful, read somewhere that one person used it and now he is not using the allopathy medicine but only uses CMD and also aspirin daily.  Does anyone know about this CMD, please comment.  I am also looking into alternate therapy ie. Ayurveda and Homeopathy, any suggestion is helpful not only to me to all those who are diagnosed with this rare disorder.

RE: Essential Thrombocytosis

by daizyjune on Fri Jan 06, 2012 01:23 PM

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On Jan 06, 2012 8:34 AM hometypist wrote:

Hi,

I have been diagnosed with Essential Thrombocythemia in January, 2011.  I have been prescribed with Myelostat which is a hydroxurea capsule 500 x 2 times and have been taking it for the past 1 year and have found that my platelets from a 1250 has come down to 450 in the month of October, 2011.  I have heard that Anderson's Concentrated Mineral Drops which comprises of all minerals is useful, read somewhere that one person used it and now he is not using the allopathy medicine but only uses CMD and also aspirin daily.  Does anyone know about this CMD, please comment.  I am also looking into alternate therapy ie. Ayurveda and Homeopathy, any suggestion is helpful not only to me to all those who are diagnosed with this rare disorder.

I would  LOVE to know more about Anderson's Mineral Drops and NOT have to take  hydroxyurea! It is the only  'unnatural' drug I put into my body, and hate having to do it. I was diagnosed in August 2010 through routine blood work..anyone who knows about the results of using the Drops, please let us alternative health people know, thanks!

RE: Essential Thrombocytosis

by kattan on Fri Jan 06, 2012 06:09 PM

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i have not heard of the drops but i have an appt. with my oncologist this month and will mention them.  my counts were 1750 when diagnosed in Sept. 2010 and are now in the normal range and have been since August 2011.  the chemo doesnt give me any bad side effects but it would be nice to use something natural!  i also still take an aspirin a day.  good luck to you.

RE: Essential Thrombocytosis

by daizyjune on Fri Jan 06, 2012 10:50 PM

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I used to take the drops years ago just for general health, before diagnosed with this stinking disease and somehow, just stopped.....my HUGE question is.. how does one know if the drops are working and when to lower or stop the hydroxurea,and what happens while taking both? Allopathic doctors  know  much to nothing about alternative health methods.... my numbers were in the millions when I was diagnosed, and I had no symptoms at all, did  not even know, but the Docs freaked out..the pills  have brought it down to  a 'normal' range, but really, if we are taking chemotherapy pills. we are  'killing ' a lot of other parts  of our body, and I absolutely hate that thought...

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