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emptyk's Message Board Messages

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RE: Essential Thrombocytosis

by emptyk - February 25, 2016

Very Starnge indeed.

I usually don't get flustered by small changes. This was jst a bit weird. They went from testing my blood every three monthes to every month. They haven't done this since I was first diagnosed with this back in 2006.

Thx for your response.

RE: Essential Thrombocytosis

by emptyk - February 24, 2016

For some strange reason my platelets have elevated. They were under control for the last year but now hagone from the 300's to the 600's. I thought it may have been from a sinus med I was taking but that was at Christmas and I haven't taken any since. They have me on one pill/day. At one time thay had me on 9 per week but I leveled off. Now I am concerned with the elevated numbers over 600.

Should I be?

On May 10, 2013 5:13 PM CindyN wrote:

i'm sorry you feel no one was answering. My daughter didn't get on the Hydrea until her platelets hit 2,500,000. She has been on the medicine ever since, almost 3 years now and she is 17. He platelets on the Hydrea stay at 1,300,000. I like reading when people write about there symptoms and side effects from the Hydrea so I know what my daughter is going through. She doesn't like to complain or tell me to much because she doesn't want to go back to dr or not be able to go out as much.

I heard Quinine has side effects that make it not worth using for this. That is all I have heard on that.

Keep posting...

When I first started taking Hydrea I would occasionally get mouth sores but I haven't had any in the last three years (I've been on Hydroxerea for 7 years). I have seen my numbers come down recently to the normal range just taking the same dosage I've been taking for a year.

On Apr 29, 2013 8:43 AM hometypist wrote:

I was wondering, my platelets increase during these past 3 months was not much has been in the range of 1001000 to 1051000, i.e. without medication, can anyone let me know theirs without taking medication.

I also understand that Quinine which is used for malarial treatment reduces platelet count, but not adviseable since only doctors can prescribe and there are lots of side effects, does anyone know about this.

I have been thinking about getting off the medication I am on. I have not been abble to get my numbers under 600,000 for about 18 monthes and has been as high as 750,000. Suddenly 2 monthes ago it dropped to 425,000 and when i went in for my knee surgery 8 weeks ago for my prelininary blood workup it dropped to 365,000. I have gone to the hemo doctor since the surgery and he still wants me to stay on the same regime of Hydrox. I'm not sure now what caused the sudden change but I would like to know if my numbers would be that dangerous if I dropped off the meds. Sorry, this doesn't help you with your question BUT if I do drop the meds I will post my results.

On Jan 26, 2006 12:00 AM Daviehug wrote:

Hi Susan T, I am 49..diagnosed Mar 2005 with platelet level 1132. Am on Aspirin only... levels are slowly increasing..last count was 1200. My next visit to Haemo is February. I feel ok, except for ringing in my ears, sometimes soreness in my feet. Sometimes suffer fatigue. I play golf and also do other exercise. So I am not going to worry too much..no point. Haemo will not put me on Hydroxyurea until platelets go to 1500 or when I reach 60 years of age (some birthday present!!), which ever comes first. I live in Ireland and drink Guinness regularly. Dark beer is supposed to reduce platelets but Guinness has not worked for me. Keep well and try not to worry. p.s. weather is cold here at present. cheers Dave

Please explain the 1500 or age 60 to me. I am 57 and have been on Hydrox for four years. Platelet level have been at 700 lately and they have put me on 7  hydrox pills a week. I'm confused as to what this hydrox is doing to my body over long period of time.

Thx

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.

Thx for the update. My numbers are still high depite the increase in Hydrox. WIll keep you posted, too.

On Mar 15, 2011 7:26 PM boisid wrote:

Well, my doc agrees that it might be advisable to see another hemotological expert. As such, I will be seeing a Dr. Lewis Silverman on March 24th.

I am actually hoping that he will suggest going off the hydrea and see what happens to platelet acount.

I'll keep you informed.

Best regards

Seeing a different hemotologist is a good idea. We went from a local doctor to Roswell but, although Roswell is a good facility, we were not pleased with the 'bedside manner' of the doctor we were assigned there. So we decided to return to the original hemotologist and have been pleased with his explanations of things.

Not related to the doctors perfomeance, the platelet count has been rising and the hemotologist has been increasing the doses of Hydre. Now taking 5 pills a week from the three originally taking when first diagnosed. The doctor also has said it is a patients right to stop use of the drug any anytime if they choose. This is something Roswell never recommneded. Our Hemotologist has spent many hours discussing options and that always helps.

On Oct 05, 2010 4:47 PM judcarhop wrote:

Hi - I am a 62 year old female & was diagnosed in Jul of 07. My platelets were almost 2 mill at that time now they are at 390k.....I use 1000mg hydrea, .5mg agrylin & a 325mg aspirin daily.  This fluctuates depending on the count I try to do lab every 3 weeks in the beginning it was weekly.  This is only a blood disorder but can turn to cancer.  The greatest risk if left untreated in a serious stroke.  In the beginning it feels like a nightmare but this disease can be managed.  I too have a knee problem but went to a chiropractor who did  prolozone injections & from the first I have been pain free.  It is a combination of homeopathic antiinflamatory med with vitamins/minerals followed by ozone oxygen.  They say they have a 75% cure rate.  I was very skeptical but so far it is working very well.  As you people with ET are at a high risk for elective surgery. 

My biggest problem with ET is fatigue & have learned to take breaks.  My life until this was busy with snow/water skiing along with training horses these I've given up because of the risk of injury but can enjoy watching others.

I have learned to control mouth sores by brushing my teeth with hydrogen perioxide & rinsing with alcohol free mouth wash.

The agrylin can cause rapid heart rate but they are supposed to changing this drug to stop that.

Bless You....Judi

 in OK

Thx for the info. I will pass this on to my wife. We have since changed Hemotologists and so far satisfied with his 'bed-side-manner'. He takes time to answer all our questions and shows concern. My wife is more at ease but gets depressed about this whole thing. She has gone on to 4 pills a week plus the aspirin and she also takes a high blood pressure med. Every time her numbers go up she gets down. We created a excel spreadsheet and it does appear that her numbers are going up but not at bad as she thought. Like you said, it can be controlled. I am interested in the statement you made about 'high risk for elective surgery'. What do you mean?

BTW - her knee has a partial replacement and she has a lot more arthritis build up. She is not elegible for a total knee replacement. For some reason (I believe its $$) they will not do a total replacement until she is in her 60's. So she tolerates the pain. Her quality of life is not great, but she's alive!

I would really like to hear more info about this disease. My wife has it and it is being controlled by Hydrocerea (a chemo pill 3 times a week). However, we know very little about the disease such as life expectancy, long term effects of taking hydroxerea over a long time, deppression, tiredness. We don't get a lot of answers from the doctor at Roswell Cancer Institute in Buffalo, NY. "Just keep taking the medication" is all I hear. Anyone's info would be great. ....and much appreciated.

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About emptyk

Patient
Other Cancer, Bone Cancer
Chemotherapy

My wife has ET and I am trying to help her get through this. She gets very depressed easily. Takes Chemo pill 3 times a week.

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