Essential Thrombocytosis

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RE: Essential Thrombocytosis

by laratonya on Sat Oct 15, 2016 05:32 PM

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I tried to send you an e-mail but hotmail is telling that this e-mail address is not correct. Do you have another address ?

RE: Is High Platelets due to Gastric Erosions/Ulcer that is not treated/diagnosed

by laratonya on Wed Nov 02, 2016 11:56 AM

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On Eki 14, 2016 3:42 amccow wrote:

Hi Lara and Friends I did try Agrylin and unfortunately was unable to tolerate it. Just tore up my stomach also made my hair fall out but Hydrea does not. Like I said before this does not mean that you will experience any of these symptoms. For me Hydrea is more tolerable. I am looking for a more holistic approach so sick of having to rely on Hydrea.... which tricks your DNA into producing less platelets. If a med can alter your DNA it has to do other things to you.... Some doctors say ET is an benign disease. I had one tell me that his Sickle Cell patients never have side affects from Hydrea.... don't know why you are Ann Marie.....I'm just relieved to have found a site where people can share ideas, hope and information

Hi Ann Marie,

Thank you for your post, it was very encouraging. I am taking Anagrelide for approx. 2 months. I will have my next blood control end of November. I wish this med will work. My doctor also says that ET is a benign disease not cancer. I think the best is to enjoy the day..

RE: Stephanie-et

by amccow on Wed Nov 02, 2016 02:46 PM

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Stephanie hi it's Ann Marie I had three blood clots all at once after a neck surgery. They were in my left arm in three different veins. In my case they were easy to spot. My arm was very swollen and dark blue. If clots are in your arms or legs they will usually be swollen, painful, warm to touch and discolored. If the clot is in your lungs... maybe shortness of breath. They are not always easy to diagnose. It's important to know all you can about ET so you can explain to your medical staff if you think a clot is present . Usually telling staff that you have a blood clotting disorder giving your symptoms, they check for clots with ultrasound.

RE: Essential Thrombocytosis

by AllenH on Mon Nov 07, 2016 06:56 PM

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Hi Everyone,

I just found this forum and though I’d post FWIW.

I was diagnosed with ET 12 years ago when I was 60. I am a male. I have been on 1000mg of hydoxyurea and a baby aspirin for 12 years. I have no real side effects so far. I am very active. I am 6’1” and 170lbs. I still do some consulting engineering.

I live in the country with my wife of 50 years. We cut trees off our property and I split them for heating our house. I work very hard.

Last year my platelets went from the 500’s to the 600’s. I suspect my doctor will increase the HU soon. I have always wondered if ET is progressive.

Last week I stood up from my stool in front of the log splitter and got a severe cramp in my left leg. I suspect it could be a blood clot. I go in for an ultrasound in a few days.

I hope the ET is not catching up to me but I suppose I have to expect that eventually. My times are in the hands of the Lord so I try not to worry.

I am wondering who on this forum has been on HU the longest. I notice many of you are young. I really don’t know how long I have had this since it was discovered on a routine check up when my count was 850. I hadn’t gone to the doctor for probably 15 years before that checkup. Maybe that’s a good thing.

RE: Essential Thrombocytosis

by bas255 on Mon Nov 07, 2016 09:30 PM

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Hi Allen,

I have previously posted here as "flan48" but trying to reset my password failed for some reason.

So, my ET was first noticed 29 years ago when I was 41. At the time there was no name assigned to it and was generically called a myeloproliferative disorder. My platelet count was typically 1-1.2 million.

Finally, about 6 or 7 years I saw a top hemotologist in our area and he put me on hydroxy urea (hydrea) slowly increasing the dosage to 1000 mg./day. For quite some time my platelet levels were in the 350-375000 range, althoiugh a dfferent lab, as part of my annual physical, always measured the level closer to 450000. 

Most importantly, both my primary dc and the hemotologist have stated that no one really knows what a "safe" level is. Based on statistics they have set the normal range as 150-400000, but what is too high? 500, 600, even 700?

Meanwhile I live my life to the fullest as you seem to do. I bike 5-6 days per week, averaging 13.-14 miles each ride, take a brisk 2-2.5 mile walk once per week, and work out with weights at least 3 times per week.

I keep my brain n shape by playing Bridge 4 times per week and doing lots of reading. I have no side effects from the hydrea -none! 

The lab in the hemo's office (it's an oncology center) has lately been measuring my platelets in the mid-high 400,000's, even hitting 510,000 recently. Of course they've had an equipment change recently as well, and as a retired chemist/scientist I can tell you that a change in methodology and/or equipment means it's virtually impossible to compare old and new test reults. So if my doc isn't worried, neither am I!

I trust this helps and wish you all the best.

Best regards

Barry

RE: Essential Thrombocytosis

by bas255 on Mon Nov 07, 2016 09:32 PM

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I apologize for the several typos in my previous note.

Barry

RE: Essential Thrombocytosis

by AllenH on Mon Nov 07, 2016 10:14 PM

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Thanks for the reply Barry. I think keeping active is very important as you get older. Sounds like you're doing great.

I am hoping my keg is a muscle and not a clot. I get the ultrasound Wed. It is really weird because I have not had any issues with my leg until this happened. It happened so suddenly when I got up from my stool I was really surprised.

I also have not had any side effect from HU that I am aware of. I know my level has climbed from the 500's to 675 recently. I hope I'm not developing a resistance to HU. I asked my Doctor if ET is progressive and he said that has not been established.

Allen

RE: Essential Thrombocytosis

by Margo48 on Tue Nov 08, 2016 01:06 AM

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Hi Allen, I was diagnosed with ET 10 years ago and also was put on Hydroxyurea. I never had side effects, or better, no noticeable side effects as the medication does affect the blood testing (white blood cells, lymphocytes, neutrophils, liver function). All went well until 5 years ago when I was diagnosed with metastasised Renal Cell Carsinoma (RCC). Both, my oncologist and neurologist, believe that my compromised immune system could have given the cancer cells the chance to grow. Anyway, since I was diagnosed with RCC stage IV 5 years ago the various cancer treatments have been keeping my platelets within the normal rates, even below normal at times, as I had to stop taking hydroxyurea. Hydroxyurea is in effect a cancer treating drug and it would interfere with the other cancer drugs I was given. I am now having immunotherapy treatment for my RCC and my platelets still remain well and truly within range. So, I have not had any specific ET medication for 5 years now. I was told by my haematologist 10 years ago that ET could develop into leukaemia, although that did happen seldomly. Best of wishes, Margo

RE: Essential Thrombocytosis

by AllenH on Thu Nov 10, 2016 09:44 PM

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Hi Margo,

Thanks for the post. I hope your RCC is under control now. Life is a real balancing act at times.

I am aware of the AML and MF possibilities of this disease. One day at a time for me.

I am praising the Lord that my ultrasound yesterday revealed no blood clots. I just pulled a leg muscle.

Allen

RE: Essential Thrombocytosis

by boisid on Thu Nov 10, 2016 11:18 PM

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On Nov 10, 2016 9:44 PM AllenH wrote:

Hi Margo,

Thanks for the post. I hope your RCC is under control now. Life is a real balancing act at times.

I am aware of the AML and MF possibilities of this disease. One day at a time for me.

I am praising the Lord that my ultrasound yesterday revealed no blood clots. I just pulled a leg muscle.

Allen

That's great news Allen!

Best regards

Barry

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