Essential Thrombocytosis

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RE: et

by daizyjune on Fri Jul 13, 2018 12:01 AM

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I agree, keeping active is crucial for any condition, especially ours! 

RE: et

by jtdemers on Fri Jul 13, 2018 12:06 AM

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On Jul 12, 2018 11:44 PM dscotesel wrote:

On Jul 12, 2018 11:00 PM jtdemers wrote:

On Jun 14, 2018 9:25 PM daizyjune wrote:

My  hemotologist told me  that the 81 mg  baby aspirin is actually crucial, and in some ways even more important that the hydroxy...has anyone else ever  been told that ? Fyi, I was diagnosed at 60, am now 68, take 2 or 3 500 mg a day depending on my mood, lead a walking club and walk 3 to 5 miles 5 times a week, eat healthy,  no red meat, take no other meds ,dislike that I  have to take that one darn pharmaceutical ??

Hi daizyjune,

I'm CALR-positive with platelets currently stable at 2 million, and per my hematologist's directions, I'm currently only taking 81 mg aspirin/day.  Before I was diagnosed with ET, I was having migraines with visual disturbances several times each month.  Since having started aspirin, I haven't had a single migraine.  I feel fine otherwise and am happy not to be on hydroxy (I took it briefly until I found out about the risks).  All this to say that, in my personal experience, aspirin without hydroxy has been a good choice so far.

Hi JT,

I never heard of the risks of hydroxy.  Do you have a link to something that describes them?

Thanks!

Sure, here is the article, by Spivak and Hasselbalch:

https://pdfs.semanticscholar.org/5752/ece17f42201a43d63e264a

Hydroxy can be a useful and safe drug; my doctor and I opted for me to discontinue it because of my relatively young age (43), and the fact that to use it for potentially decades could carry some risks.

RE: et

by rockerc on Fri Jul 27, 2018 12:40 PM

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62 years old here, just been diagnosed with ET and a count of close to a million. Now on Hydrea but a relatively low dose, one cap a day, and off to labs this morning to see if that is working. Staying active is difficult as my passion is mountain biking, and the doc says that riding alone in the desert ain't too clever. Hard to find people to ride with in my neck of the woods! And they are usually not too happy when I ask to tag along and then ask them to call 911 if I topple! I foresee the gym being much more visited from now... I do like to stay active, but am having difficulty with motivavtion, and the fatigue can be huge now. My work involves a lot of long haul travel, so the daily aspirin is vital to me also.

I am now having flashbacks to when I was battling Hepatitis C. That was a battle I won, but this I understand is not so much a battle as a long drawn out and rather frustrating campaign. That is quite a depressing thought at times.

RE: et

by iamcured on Sun Aug 05, 2018 05:26 PM

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I am.having ET since 2011, have tried many things and about two years back I had taken omeprazole for acid reflux and my platelets went down by almostb150000.  There is no modern doctor who could cure my acid reflux due to which i belueve my platelets is going up.  I havd blood coming out of sputum sometimes.  This is the reason for ET but no qualified doctors who can cure the damage to LES and esophagus.  Can anyone help me as I am sure it is due to this.

RE: et

by Ajtorres12 on Sun Aug 12, 2018 05:41 PM

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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. 

RE: et

by AllenH on Sun Aug 12, 2018 06:00 PM

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Hi Alex,

You might want to find a doctor who specializes in MPN's. Leukemia is not inevitable.

Take heart, keep working, and keep yourfself in shape.

From Mayo clinic Website.

Rarely, essential thrombocythemia may progress to these potentially life-threatening diseases:

  • Acute myelogenous leukemia.This is a type of white blood cell and bone marrow cancer that progresses rapidly.
  • Myelofibrosis.This progressive disorder results in bone marrow scarring, leading to severe anemia and enlargement of your liver and spleen.

RE: et

by dscotesel on Sun Aug 12, 2018 07:14 PM

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Have you looked into fasting?

RE: et

by dscotesel on Sun Aug 12, 2018 07:18 PM

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On Aug 05, 2018 5:26 PM iamcured wrote:

I am.having "" target="_blank" rel="nofollow">http://am.having " target="_blank" rel="nofollow">am.having ET since 2011, have tried many things and about two years back I had taken omeprazole for acid reflux and my platelets went down by almostb150000.  There is no modern doctor who could cure my acid reflux due to which i belueve my platelets is going up.  I havd blood coming out of sputum sometimes.  This is the reason for ET but no qualified doctors who can cure the damage to LES and esophagus.  Can anyone help me as I am sure it is due to this.

"Have you looked into fasting?" was meant as a reply to iamcured's 8/5 message, which I thought would be quoted, and should definitely be quoted this time.

RE: et

by Ajtorres12 on Sun Aug 12, 2018 07:55 PM

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Thank you allenH. For your response, I am currently in a limbo state as far as doctors. Stanford liver dept has handed me off the the oncology dept. Oncology wants to put me on blood thinners and try and perform ANOTHERr tips procedure to help relieve the high pressure in my system due to the thick blood. I am also in the care of a nutritionist to help me put some of the 60lbs I lost when they took out my small intestines. I was about 190 before the surgery got down to 130 and now am starting to put some weight back on (up to 150 now). A small positive step but positive nonetheless. I have been reading everything I can about MPN and leukemia there is so much info out there its overwhelming. As far as TIPS is concerned in 2010 and again in 2013 drs did the tips but within a few days it clogged up again. The last time it was done I passed away and had to be mediflighted to San Francisco to save my life. I talked to the dr that did the tips 2 weeks ago and he said is his opinion it's best to not do a tips again. And I agree with him. The only thing the drs agree on is that I am very complicated and they don't really ln now what to do with me. 

RE: et

by Margo48 on Mon Aug 13, 2018 09:33 AM

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I do not know who started this thread, but i was diagnosed with ET in 2006 and l took hydroxyurea until i was diagnosed with kidney cancer ((RCC stage IV) in 2011. I never had any problems with ET and did lead a normal live whilst using hydroxyurea. Best wishes, Margo
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