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Is Essential Thrombocythemia a blood disease or cancer?

Posted by chimo @chimo, Mar 21 12:47pm

I’m confused because I think Hydroxyurea is a chemo drug. Can someone clarify this for me?

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panamsandy | @panamsandy | Nov 29 6:33pm
In reply to @cmercer50 "I was diagnosed with ET with JAK2 mutation a little over a year ago and even..." + (show)
Profile picture for cmercer50 @cmercer50

I was diagnosed with ET with JAK2 mutation a little over a year ago and even my hematologist doesn't call it cancer, just a blood disorder. As a result, I don't think I have taken it as seriously as I should. I have been taking HU for almost a year without any side effects, so I feel pretty fortunate. I'm really glad to see all the discussion here about ET. The input from other patients is so valuable. I was really scared to start taking the HU and found a lot of information and encouraging words on this forum. My thanks to everyone who participates.

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@chris56

My doc says ET does not fit the criteria of a "cancer." I'm sticking with that.
I'm on baby aspirin...I've never heard of treating a cancer with that.
Just my two cents.

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cmercer50 | @cmercer50 | Nov 30 8:07am
In reply to @loribmt "Hi @cmercer50 So glad you jumped into the ET discussion. Being able to connect with other..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @cmercer50 So glad you jumped into the ET discussion. Being able to connect with other members who have the same health diagnosis can broaden the scope of knowledge with all the shared stories. Whether your doctor refers to your essential thrombocythemia as a blood cancer or blood disorder, it still needs to be taken seriously because it indicates a change in the health of your bone marrow in producing healthy cells.
As you can see, you’re not alone with taking HU for your ET. It’s a mainline treatment for patients with myeloproliferative disorders such as ET, PV and myelofibrosis. It’s great to read you’re having no side effects and thank you for sharing that! Sharing positive feedback can definitely help allay some fear others may have about taking the drug. Sometimes our bodies need a little help with doing their job. ☺️

When you were diagnosed had you been having symptoms that lead to the discovery of ET or was this found through routine physical?

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@loribmt Thanks for your response. I was diagnosed with ET through routine labs that showed high platelet count. I had no other symptoms. I was referred to an oncologist who ordered the genetic test that found the JAK2 mutation. I was already taking a blood thinner for recently diagnosed a-fib, so I don’t take aspirin. I asked my doctor about taking low-dose aspirin as well as Eliquis since they work in different ways, but he said it wasn’t necessary. I’m still curious about that.

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Lori, Volunteer Mentor | @loribmt | Nov 30 9:09am
In reply to @cmercer50 "@loribmt Thanks for your response. I was diagnosed with ET through routine labs that showed high..." + (show)
Profile picture for cmercer50 @cmercer50

@loribmt Thanks for your response. I was diagnosed with ET through routine labs that showed high platelet count. I had no other symptoms. I was referred to an oncologist who ordered the genetic test that found the JAK2 mutation. I was already taking a blood thinner for recently diagnosed a-fib, so I don’t take aspirin. I asked my doctor about taking low-dose aspirin as well as Eliquis since they work in different ways, but he said it wasn’t necessary. I’m still curious about that.

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@cmercer50 With ET (essential thrombocythemia) patients generally have an elevated platelet level above the normal range. This can be problematic with, basically, causing a traffic jam where the platelets can crowd/stick together and cause blood clots to form.

Aspirin acts as a blood thinner, reducing the potential for developing blood clots and strokes by keeping the platelets from sticking together. It’s broader in its applications but less effective for certain clotting disorders such as your doctor is concerned about with your a-fib.

Eliquis, though a different mechanism than aspirin, is a blood thinner that’s more targeted for specific conditions related to clotting.
Your doctor mentioned taking both types of blood thinners isn’t necessary because Eliquis has you covered. Too much of a good thing can cause issues in the opposite direction. ☺️ Does that make sense?

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cmercer50 | @cmercer50 | Nov 30 12:13pm
In reply to @loribmt "@cmercer50 With ET (essential thrombocythemia) patients generally have an elevated platelet level above the normal range...." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@cmercer50 With ET (essential thrombocythemia) patients generally have an elevated platelet level above the normal range. This can be problematic with, basically, causing a traffic jam where the platelets can crowd/stick together and cause blood clots to form.

Aspirin acts as a blood thinner, reducing the potential for developing blood clots and strokes by keeping the platelets from sticking together. It’s broader in its applications but less effective for certain clotting disorders such as your doctor is concerned about with your a-fib.

Eliquis, though a different mechanism than aspirin, is a blood thinner that’s more targeted for specific conditions related to clotting.
Your doctor mentioned taking both types of blood thinners isn’t necessary because Eliquis has you covered. Too much of a good thing can cause issues in the opposite direction. ☺️ Does that make sense?

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@loribmt Yes. That makes sense and satisfies my curiosity. Thank you for your input.

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jbcl | @jbcl | Nov 30 12:26pm
In reply to @loribmt "Hi @cmercer50 So glad you jumped into the ET discussion. Being able to connect with other..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @cmercer50 So glad you jumped into the ET discussion. Being able to connect with other members who have the same health diagnosis can broaden the scope of knowledge with all the shared stories. Whether your doctor refers to your essential thrombocythemia as a blood cancer or blood disorder, it still needs to be taken seriously because it indicates a change in the health of your bone marrow in producing healthy cells.
As you can see, you’re not alone with taking HU for your ET. It’s a mainline treatment for patients with myeloproliferative disorders such as ET, PV and myelofibrosis. It’s great to read you’re having no side effects and thank you for sharing that! Sharing positive feedback can definitely help allay some fear others may have about taking the drug. Sometimes our bodies need a little help with doing their job. ☺️

When you were diagnosed had you been having symptoms that lead to the discovery of ET or was this found through routine physical?

Jump to this post

@loribmt
ET was discovered through an al physical. I had had no symptom and was shocked with the confirmed diagnosis using a bone marrow biopsy.
I am blessed that the baby aspirin and daily 500 mg of hydroxyurea has produced no negative side effects, but it has reduced my platelet numbers over the last two months.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 30 1:05pm
In reply to @jbcl "@loribmt ET was discovered through an al physical. I had had no symptom and was shocked..." + (show)
Profile picture for jbcl @jbcl

@loribmt
ET was discovered through an al physical. I had had no symptom and was shocked with the confirmed diagnosis using a bone marrow biopsy.
I am blessed that the baby aspirin and daily 500 mg of hydroxyurea has produced no negative side effects, but it has reduced my platelet numbers over the last two months.

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Hi @jbcl. Because blood conditions, blood cancers and bone marrow disorders can develop very slowly, often without symptoms initially, it’s not surprising that so many are discovered with routine bloodwork associated with annual physicals. Over the course of a few years doctors and patients may notice an upward or downward trend in certain blood numbers. That’s frequently the first clue, the trending numbers. Occasionally, there will be an all-out ‘shock and awe’ situation like I had where blood work, just 6 months prior, showed no hint as to the bomb about to drop a few months later.

Your news of the hydroxyurea reducing your platelet numbers is very encouraging. That’s the goal…to keep your body from overproducing platelets and the aspirin will help to prevent potential complications of blood clots. All with no side effects is a win/win! With that news in your back pocket it’s easy to just get on with life! ☺️
How often do you have labs taken at this time?

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jbcl | @jbcl | Nov 30 1:50pm

I started with one per month. Now I will check in two months. If the downward trend continues, I will be checking quarterly.

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cpmcmah | @cpmcmah | Dec 3 8:41am

Besremi is a first line treatment for PV. I'm not sure if you can use it for ET or MF, but it's much better than HU.

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jeanette1954 | @jeanette1954 | Dec 4 8:44pm
In reply to @cpmcmah "Besremi is a first line treatment for PV. I'm not sure if you can use it..." + (show)
Profile picture for cpmcmah @cpmcmah

Besremi is a first line treatment for PV. I'm not sure if you can use it for ET or MF, but it's much better than HU.

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@cpmcmah

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drbart86 | @drbart86 | Dec 5 9:45am

Besremi may not be a normal ET med, 2 docs (both mpn specialists at research institutions) have suggested it will be my next course of action. HU worked for a few years, now on Jakafi. Sometimes need to dig deep in the toolbox.

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