1. < Blood Cancers & Disorders

Essential Thrombocythemia (ET) and viruses

Posted by arti4 @arti4, Oct 8, 2022

I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are below 600) and currently taking only 2 low-dose aspirin a day. Since my diagnosis I’ve gotten 2 colds/viruses. The first one turned into pneumonia, and I’ve never had pneumonia in my life; I’m currently sick with another cold or virus and on day 6. I feel like it’s getting progressively worse each day instead of better. Is this because of the ET? Is this how every little illness is going to be from now on?

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eileen11108 | @eileen11108 | Feb 9, 2023
In reply to @julieanna57 "I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis?..." + (show)
@julieanna57

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

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Hi Julieanna57,

I am curious whether you are taking anything other than aspirin. Your platelets seem very high.

I am 78 and have Essential Thrombocytosis and treated with Hydroxyurea which is causing daily headaches, some migraines, I will discuss change of medication when I next see the hematologist,

Best wishes, Eileen

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bettyk49 | @bettyk49 | Feb 8, 2023

I just have them when my iron points get too . I think it was just twice last year but maybe 2 to 3 times a year the past 9 years. thanks Again.

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 8, 2023
In reply to @bettyk49 "Thank you so much. My next appointment is March 13. They have been giving me a..." + (show)
@bettyk49

Thank you so much. My next appointment is March 13. They have been giving me a choice of 6 weeks or 3 months and tell me to call if I need to come in sooner. I choice 3 months but after reading my chart I wished I had an earlier appointment. I have had many iron infusions. So when I start feeling real tired I call for a sooner appointment. I had the TIA in 2014 and I have had chrons since 1990. I just thought they were keeping check on my anemia. Is Essential thrombocythemia a blood cancer? When I looked it up that is what it said. I definitely will talk with my PA. Thanks Again!!

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Basically, all of your symptoms of anemia and the ET may related. You’re not getting the benefit of full, healthy blood cells. So the fact that your hematologist is doing routine checks on your anemia is two-fold. It also keeps track of your Essential Thrombocythemia. It is a type of blood cancer but it’s not generally aggressive and takes time to develop over years. And at this point in time, blood thinners would be the treatment anyway so you’re covered.
The main concern is to prevent blood clots. So the blood thinner is very important to keep taking. Try to avoid sitting for long periods of time in one place…move around to keep your circulation up. Hydration is important too.
I found a pretty good article from Blood-Cancer.com which explains ET. https://blood-cancer.com/clinical/essential-thrombocythemia

Try not to let the word Cancer form your thought pattern now. Nothing has changed as you’ve most likely had this for several years. ☺️ Just keep living like you have and then have a chat with the NP at your next appt.

It’s really great that you can go in to get iron infusions when you feel you need them. How frequently do you get them?

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bettyk49 | @bettyk49 | Feb 8, 2023

Thank you so much. My next appointment is March 13. They have been giving me a choice of 6 weeks or 3 months and tell me to call if I need to come in sooner. I choice 3 months but after reading my chart I wished I had an earlier appointment. I have had many iron infusions. So when I start feeling real tired I call for a sooner appointment. I had the TIA in 2014 and I have had chrons since 1990. I just thought they were keeping check on my anemia. Is Essential thrombocythemia a blood cancer? When I looked it up that is what it said. I definitely will talk with my PA. Thanks Again!!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 8, 2023
In reply to @bettyk49 "I had a TIA at the end of 2014. After seeing many Doctors one Doctor referred..." + (show)
@bettyk49

I had a TIA at the end of 2014. After seeing many Doctors one Doctor referred me to a hematologist. Who is also called an oncologist. I have chrons and most of the past 9 years I have been anemic and I would just go and have an iron infusion. I usually have low red blood, white, hematocrit but high platelets. I have infusions for chrons also. I was looking for something on my My Chart and found I had Essential (hemorrhagic) thrombocythemia. I have so many conditions on My Chart I never noticed it. I never really fill great but I thought it was because of my chron and fibromyalgia. My Oncologist has never suggested I take anything for this disease and never really mentioned it. I can't take asprin because of chrons. I do take a blood thinner which was prescribed by another Doctor. I am usually given a choice of whether to come back to the Doctor in a month and a half or three months. I just thought if I get to feeling too bad I would just make an appointment and have another iron infusion. Does the name ( hemorrhagic) make the disease I have different from essential thrombocythemia?

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Hi @bettyk49 I see you’re new to our forum and I’m happy you found us. You recently discovered that you have essential thrombcythemia. With your history of a TIA, the blood thinners you’re already on play an active role in treating ET since having too many platelets can cause abnormal blood clotting. So the blood thinner is taking the place of the aspirin.
It’s good that you’re seeing an oncologist/oncologist. That is a blood specialist. I’m surprised he/she didn’t talk over your diagnosis with you. I think at your next appointment with your hematolgist or their Nurse Practitioner, you should discuss what you’ve found on your My Chart so there is some clairification for you.
You were wondering if hemorrhagic thromboyctyemia is worse than essential thromboyctyhemia. They are one in the same. Essential thromboycythemia was formerly know as Hemorrhagic thrombocythemia.

When is your next appointment?

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jaebless | @jaebless | Feb 5, 2023
In reply to @sandy1959 "Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is..." + (show)
@sandy1959

Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is keeping my platelets at an acceptable level. I find I am fatigued quite a bit. I was just wondering how to combat the itching. I take an allergy pill daily, but I break out in hives and they come and go. It’s just sometimes they are just relentless.

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I heard Claritin works for the itching.

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styleesteve | @styleesteve | Feb 3, 2023

Hi Artie 4
Have you had the covid Vaccines?

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Rhonda Gregory | @rjgregory440 | Feb 3, 2023
In reply to @eileen11108 "I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my..." + (show)
@eileen11108

I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my paperwork said I had Essential Thrombocythemia. I investigated this and found they are one and the same. Reason why?

Eileen

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according to the nhlbi.nih.gov website: Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia. Thrombocytosis refers to a high platelet count caused by another disease or condition.

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eileen11108 | @eileen11108 | Feb 3, 2023
In reply to @julieanna57 "I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis?..." + (show)
@julieanna57

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

Jump to this post

I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my paperwork said I had Essential Thrombocythemia. I investigated this and found they are one and the same. Reason why?

Eileen

REPLY
1 reply
sandy1959 | @sandy1959 | Feb 2, 2023

Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is keeping my platelets at an acceptable level. I find I am fatigued quite a bit. I was just wondering how to combat the itching. I take an allergy pill daily, but I break out in hives and they come and go. It’s just sometimes they are just relentless.

REPLY
1 reply
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