Essential Thrombocytosis

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RE: et

by CindyN on Mon Aug 13, 2018 01:40 PM

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Alex, seem's like your dealing with Dr's who don't know much about ET. It's very rare it develop's into leukemia. You can live a long life with ET. Most patient's until age 60 are treated with a aspirin. My daughter dx at age 13 with platelet's going high as 2.8 mil.  She is on no med. and her platelet's range 1 mil - 1.8 mil. She has Von Willebrand so no aspirin, it causes bleeding, have you been checked for that. Many patient's with ET develop Von Willebrand. Dr. Tefferi at Mayo says treat symptoms. You need to see a MPN specialist.

RE: et

by Ajtorres12 on Mon Aug 13, 2018 02:00 PM

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Thank you cindy for the reply, you are right on point. My drs here dont know what to do with me so far. I believe I have had This MPN since 2000, I did not have any.major problems until 2010 when a blood clot in my portal vein caused the death of my small intestines. That's when all my health issues showed up. I will definitely look into the VW. Like I said before ocology wants to put me on some sort of blood thinner to help reduce the clotting risk but the varicees in my esophagus and stomach have  the drs scratching their heads. My platelets have actually been slightly low for the last few years dr thinks it's my spleen absorbing all the extra platelets and that's why my spleen is triple it's normal size (same lump from 2000). Thanks again for the info I will keep reading 

RE: et

by iamcured on Fri Sep 14, 2018 04:29 PM

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On Aug 12, 2018 5:41 PM Ajtorres12 wrote:

Hello, my name is alex and I was diagnosed with ET a year and a half ago. I have probably had it since 2000 but my GP did not catch it. I had a lump on my left side under my rib cage that felt like it was not allowing food do digest. Doc told me to lay off fried foods and protein shakes. And add some metamucil to my diet. It helped with the the "full" feeling but was only masking the real problem. .fast forward 10 years and I developed a blood clot that killed my small intestines and caused me to get septic. For 5 years Stanford hospital here in nor cal was stuck on cirrhosis of the liver causing the clotting and tried to give me a liver transplant twice (I was denied due to my low body weight). Then in early 2017 a different doctor tested me for clotting issues and found Jak 2 mutation which led to my  MPN diagnosis (ET).  I had the bone marrow biopsy in early 2018 and it showed no leukemia yet. But they said its inevitable due to the overproduction of blood. Just a matter of time. I had problems with internal bleeds of the stomach and esophagus that makes blood thinners very high risk to take. So I'm stuck for now letting my body try and heal itself with zero drug interaction. Just keeping an eye on blood work for any big changes. I'm still working as an auto mechanic and living life. 

Hi Alex, I am in the same situation.

I also has blood in the sputum sometimes more frequent sometimes less and i believe this is due to acid reflux to throat and when i take PPIs my platelets reduce by 150000 around

RE: et

by dcpatan on Fri Jan 25, 2019 11:26 AM

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i am from india my daughter is 12 year old she is having 1.7 mn platelet when dignosed 8 month back , after course of anemia (iron tablet and ferritin) it came down to 1.2 mn doctor ordered for bonemarrow biopsy , the result awaited please help me if any result is possitive  

RE: Essential Thrombocytosis

by JHud423 on Tue Feb 19, 2019 05:58 AM

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Hi, I am glad to finally find somewhere to go where I can share my experience with ET amongst people who have HEARD of it, much less have it. Anyway, I’ll get to the point. I’m a 37 year old male, and I was diagnosed with ET when I was around 24-25, I want to say. At 28, I had a cerrebelar stroke when my platelets were over 1 million (was not medicated at the time). For the past 9 years, I have been on hydrea and platelets have been in the 300-450,000 range, so I have definitely been pleased with that. That being said, what I am NOT pleased with, is the fact that I have a wife, a 3 year old son and a 2 month old daughter, but I cannot get life insurance. I have applied at least 5 times in the last 3 years (as recently as 1 month ago) and have been rejected each time. What really bothers me, is the fact that life insurance companies ask if you have had a stroke in the last 5 years, to which I answer no (it was 9 years ago at this point). However, they still always come back and use the stroke as reason not to cover me. I have a good income, and my wife is staying home with our children after the end of this year, so I will then be the sole provider. Have any of you had similar problems to mine, and does anyone know of some companies that are known for covering people with ET/history of stroke? Thanks so much - Jason

RE: Essential Thrombocytosis

by dcpatan on Tue Feb 19, 2019 06:11 AM

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Thanks dear for your kind reply,

i much  upset to read insurance company dont give you insurance

my daughter having the platelet between 1.15 to 1.75 million

this come to khow during routine checkup , but after 6 month annemia treatment , doctor give hydrea 500mg , now increse dose 750mg , her bonmarrow suspective and having tripple negative now doctor order for NGS test

she does not having any health problem till date. 

RE: Essential Thrombocytosis

by Margo48 on Tue Feb 19, 2019 07:45 AM

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Sorry to hear about that. Are you located in USA or Australia? I was diagnosed with ET in 2006. Luckily, my husband had already a life insurance on my life. Therefor I do not know what my insurance company would do. It sounds that there is no longer a reason to refuse you a life insurance. Sometimes you get straight answers if you involve your member of Parliament. Good luck, I hope that you do get the insurance. Greetins, Margo

RE: et

by dcpatan on Tue Feb 19, 2019 09:41 AM

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my daughter is 12 year old her platelet very from 1.2 to 1.5 milion she is also dont have any symptoms ,she is having tripple gegative in bonmarrow test

doctor ask for NGS test. 

RE: Essential Thrombocytosis

by CindyN on Tue Feb 19, 2019 02:30 PM

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I hate so bad you have this problem, I purchased life insurance for my daughter when she was about 6. She was diagnoised at 13. Best investment I ever made for her. You should get your children a policy that they can pay now at a low rate. My nephew was diagnoised with juvenile diabetes and was unable to get insurance when he was older except through his job so I knew to get it for my daughter. I wish you luck finding it. I hear on commericial about no physical type of insurance but I am sure you have to fill out questionaire about your known health problems. Let us know what you find.

RE: et

by CindyN on Tue Feb 19, 2019 02:53 PM

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So sorry about your daughter, mine was 13 when diagnoised, main thing is to not panic, you can live a long life with ET. My daughter is now 22 and has not had any major problems, just headaches and fatique with is normal with ET. She is not triple negative so I am sure you will have to do what your Doctor's advise. On facebook there is a group that is wonderful with thousand's with ET who share their experiences. Prayers for your daughter.

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