Essential Thrombocythemia: Looking for information and support

I agree about lack of empathy. My sister doesn't seem to understand about how this could progress to something worse. I've only told a few friends about my ET and daily chemo.

Good morning, @sudutoo. I hope you have your reading glasses on! You have a lot of questions about essential thrombocythemia and thrombocytosis so I thought I’d drop a load of reading material out here for you.

Throughout my acute myeloid leukemia and bone marrow transplant journey 5 years ago, I became fascinated with blood cancers and blood conditions. I’ve learned first hand about the intricacies of our blood, bone marrow and immune systems, how mutations of genes work to mess with the order of things! We’re so incredibly complicated, it’s mind boggling that we even stay alive…just one little random mutation in the DNA and it can change the course of someone’s life.

You were diagnosed several years ago with thrombocytosis and wondering if this changes to ET.
In a large nutshell, Thrombocytosis occurs when another disease or condition causes you to have a high platelet count.

Thrombocythemia occurs when faulty cells in your bone marrow make too many platelets. Thrombocythemia is most often caused by your genes. Mutations or changes in the genes that control how your bone marrow forms platelets may cause thrombocythemia. Examples of such genes include JAK2, CALR, and MPL.

I believe you mentioned in one of your posts that you have a mutation in the JAK2 gene. That can be a key factor in the development of ET, PV (polycythemia vera) or MPF (myelofibrosis). Those are part of a group of blood conditions referred to as myeloproliferative neoplasms or disorders.

A good article from, verywellhealth.com explains the involvement of the mutated JAK2 gene in the potential development of these conditons:
https://www.verywellhealth.com/jak2-mutation-5217909
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Because of your elevated platelet count, your doctor suggested taking HU and that’s been successfully treating your condition since 2011. That sounds like a good track record! Sometimes we have to weigh the overall risk/reward benefit of taking meds that have potential side effects to keep us healthy and able to enjoy our lives to the fullest. While I’ve seen the reference to HU/leukemia link there seems to be no confirming evidence. Having an myeloproliferative disease has that remote, but underlying capability on its own without involvement of HU.

You might be interested in one of the articles in my list regarding HU and no evidence of it causing leukemia.
From The Hematologist by Ash Publications, Hydroxyurea's Leukemogenicity in Myeloproliferative Neoplasms: A Not Guilty Verdict https://ashpublications.org/thehematologist/article/doi/10.1182/hem.V8.6.1218/462498/Hydroxyurea-s-Leukemogenicity-in#

These last 5 articles all discuss thrombocytosis and essential thrombocythemia. I’m hoping by reading through these that you’ll better understand your blood condition of elevated white blood cells.

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https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
https://www.healthline.com/health/primary-thrombocythemia
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https://www.verywellhealth.com/essential-thrombocythemia-2860907#:~:text=Essential%20thrombocythemia%20is%20a%20rare%20blood%20cancer%20that,potentially%20life-threatening%20complications%20like%20heart%20attack%20or%20stroke.
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https://www.medlink.com/handouts/essential-thrombocythemia#
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https://www.healthgrades.com/right-care/blood-conditions/essential-thrombocythemia
I know this is a long list for you to work through so take your time and take notes! Let me know if this was helpful for you!

What is a tolerable platelet level? Four years CALR, initially 700 level, been over 1 million a couple times, steadily increased hydroxy to 3x1500/4x1000. My platelets run in the 700's, my MCV is increasing and blood counts are decreasing. I take Xarelto and lo dose aspirin. I read so many here struggle to get platelets under 500? later 70's, exercise, eat, etc.

I have read somewhere that HU may actually increase the risk of leukemia by a slight degree? Possibly because they use it on patients with JAK? I have been on HU since early 2011 (?) and the Dr. several months ago desired to know if my liver was inflaming; before it has just been about my lymph nodes and ease of bruising. How many years of thrombocytosis does it take before they say that one has ET (no underlying infection nor cancer found)?

Here is a link that is important to read https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
It seems difficult at first but keep rereading it and you will have a better understanding.
I have had ET for 21 years and I am also here to give and get support.
look forward to hearing more from you.

I totally agree! As long as you are moving around people forgot your disease. I’m 56 and people think all is well since I do not complain. I only been on the Droxia 400 mg. The doctor said everyday but everything was dropping. He mention 200 mg so that why I am taking the 400 mg every other day. I work remote and take my medicine at 6pm. I found I’m not as sleepy through out the day.
I go back for my check up on the 18th of April. I will let the doctor now what I’m doing.
I don’t recommend anyone to make up their own schedule like me. I just have a different process for myself. I discuss it with my husband and 3 grown children after my research.
Just try to affirm yourself daily and do something that gives your heart joy!!!

I found out I had ET with J mutation by doing my yearly physical exam. No proof but it was always around 300 until the COVID shoots.

Haha, I love the "you don't look sick" line. People seem to think that because I seem perky and normal at 1 pm, I can last until midnight. Nope, I'll give you until 6 pm, max, and then I'm going home to crash because my brain is exhausted, I've got the chills or sweats, and I have to will myself just to get out of a chair.

This is the only place I feel understood.

Alas, our "chronic gremlin" is invisible to everyone else.

Totally agree! The lack of empathy is unreal. We look ok so they just to not understand that even though I’m making the best and moving with my life, I do have a chronic gremlin hanging over me. I hear more about their day to day ailments like headaches, muscles aches, etc. when I say something I get oh be happy the hydroxyurea (that I just started taking ) is slowly moving my platelets down. I’m not a complainer but just basic acknowledgement that I’m going thru something bigger than a bread box would be nice just not being dismissed 🤪.

I totally agree.