1. < Blood Cancers & Disorders

Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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bj87 | @bj87 | Mar 9, 2023
In reply to @cweible19782006 "Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease..." + (show)
@cweible19782006

Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease which I have read can be a complication of essential thrombocythmia. How high were your platelets when you were first diagnosed if you can remember and did they ever go up and down?

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As I remember they were in the nine hundreds. I was prescribed hydroxyurea and took it for years seeing the hematologist monthly. No symptoms at all. A year or two ago I became anemic with low red blood count. That’s when it got complicated. Had a bone marrow biopsy and discovered it wasn’t making any red blood cells. The HU kept the platelets down but inhibited red cells. Second opinion and switched to Anagralide but same thing Now I see my hemo every 2 or 3 weeks and get a unit of blood whenever my hematocrit drops to 22 or lower. Lately every 2 or 3 weeks. That takes me up to 24 or 25. I can function quite well at those levels. 27 is as high as it’s ever been. 45 is the low end of the range.
I’m ok with doing it the rest of my life which I expect to be a number of years. A small problem considering I have no pains or other problems.
I hope this helps

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1995victoria | @1995victoria | Mar 10, 2023

Just a heads up ?maybe? I got my second shingrix shot and a week later had blood test for my ET. My platelets dropped over 150,000 from previous blood test, with no change to my HU. I did some research and did not show up under shingrix or ET, but it did show up in research for low platelets, so just thought I'd pass it along. I have link for research study if you're interested. I sent research to my hemo/onco

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claire39 | @claire39 | Mar 11, 2023

Hi.....my name is Claire and I also have ET. I have been taking Hydrea for almost five years. For the most part things are good. The meds keep my platelets at a reasonable level and I have blood work every month to make sure they stay that way.
Side effects are, of course, major fatigue and still some itching. I listen to my body and rest when I am having a day were I know I can't go out or really do anything physical.
I very seldom have nausea from the Hydrea so I try to stay positive and grateful for each GOOD day.
Good luck with your journey, I know it can be scary but I hear of others who have had ET for years and are doing well.......best regards....Claire

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vivoconte | @vivoconte | Mar 11, 2023

Hola, soy nueva en el grupo y les quiero compartir mi experiencia.
Tengo 40 años y me diagnosticaron trombocitosis escencial hace 9 años.
Desde ese momento tomo hidroxiurea y lo he llevado bastante bien salvo por el cansancio.
Me gustaría saber de otras personas que tengan trombocitosis y sus experiencias con la hidroxi.
Gracias, saludos.

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1 reply
vivoconte | @vivoconte | Mar 11, 2023

Hola, tomo hidroxiurea desde hace 9 años. Por el momento el único síntoma importante que he tenido es el cansancio.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 13, 2023
In reply to @vivoconte "Hola, soy nueva en el grupo y les quiero compartir mi experiencia. Tengo 40 años y..." + (show)
@vivoconte

Hola, soy nueva en el grupo y les quiero compartir mi experiencia.
Tengo 40 años y me diagnosticaron trombocitosis escencial hace 9 años.
Desde ese momento tomo hidroxiurea y lo he llevado bastante bien salvo por el cansancio.
Me gustaría saber de otras personas que tengan trombocitosis y sus experiencias con la hidroxi.
Gracias, saludos.

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Hola, @vivoconte
I moved your post to this discussion group:
- Essential Thrombocythemia: Looking for information and support: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

I did this so you can connect with other ET members taking hydroxyurea like @nohrt4me, @claire39, @barb123keller

You may also be interested in this related discussion:
- Essential Thrombocytosis - what's your experience with Jakifi? https://connect.mayoclinic.org/discussion/essential-thrombocytosis/

Fatigue is a common side effect of hydroxyurea. How do you manage it?

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1 reply
ttown | @ttown | Mar 14, 2023
In reply to @wiggins32 "Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the..." + (show)
@wiggins32

Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the courage and strength to finding solutions in care and feeling well again. I am curious what was the "aha" moment when docs decided to do the bone marrow biopsy? After 5 yrs of severe iron deficiency anemia, with so many life-altering symptoms that I had to retire, even though my plan was to work another 2 yrs (just turned 68). I've had a lot of tests, but still no diagnosis of any kind. I've implored my doctor to check my bone marrow, and nothing. Also, you mentioned about the numbness/tingling in leg and feet, and I totally relate to these symptoms. When my iron drops, I have these very things 24/7, but much more in the evenings and especially when I'm lying down...sleeping is sometimes a challenge. Just days ago, I was diagnosed with peripheral neuropathy in both feet, but worse on right side. I suppose they will do more tests. My hands and right wrist are this way, too. So much worse now after 5 yrs of IDA. Mine seems to be progressing to now neuropathy in my shoulders, especially right side. I am so frustrated that they won't test my bone marrow. Iron saturation % is always low (around 5). Oh, I have swollen tongue with small lesion on edge all the way around (but only when iron is low). Do you have any eye symptoms? Ugh. One of the most challenging symptoms when iron is low.

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Hi Wiggins32, I have had slightly low iron and now take iron supplements...Many of the symptoms you are describing, I have not had. My hydroxyurea was adjusted to 4 times a week 500mg after sores in my mouth occurred. No more sores..... My essential thrombocythemia was discovered after a JAK2 blood test procedure which took approximately two weeks for results. After seeing my oncologist for the first time in October, he scheduled the bone marrow test which confirmed all that I had been told. I am scheduled for a venous insufficiency test next month because of the numbness and also some small varicose veins in my legs. I do not have the eye problem you are having. I am so sorry for all the symptoms (problems) you are having...Praying for answers for you - answers and understanding what is happening, can at least give you a direction. I am sorry I failed to respond sooner - I missed your message.

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chetalbin | @chetalbin | Mar 14, 2023

After two weeks on one pill of HU my eGFR went from 82 to 52. Has anyone else had any similar results. I’m being treated for MPN/ET/JAK2

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1 reply
lov9 | @lov9 | Mar 16, 2023
In reply to @cweible19782006 "Thanks for the encouragement! I'm just worried because I fear that I've had this for a..." + (show)
@cweible19782006

Thanks for the encouragement! I'm just worried because I fear that I've had this for a long long time. I had a hemorrhagic stroke when I was 24 caused by a vertebral dissection and we never knew why it happened and I've always had chest pain ect and then in 2018 I had another dissection of the vertebral artery and didn't know why. Then 2 years ago I was diagnosed with CAD and had 2 stents placed in my LAD and still have 50% in my RCA and was recently diagnosed with the cardiac microvascular disease which is the slow flow of blood into my heart. Now I am short of breath constantly and have chest pain pretty much all of the time. I've always been on a full adult aspirin and had previously taken plavix for my stents. So hopefully with knowing what we know now I can get on the right meds. I just hope it's not to late for me....

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My husband was diagnosed w/ ET. It's been 4 years. His RBC and Hgb are low. So by October last year, his doctor added Anagrelide everyday and HU every 3rd day After taking Anagrelide for 2 months, then he developed shortness of breath. Then I took him to ER, and was diagnosed heart failure . His lungs was accumulated w/ fluids and his heart ejection fraction is low By Echocardiogram) I have read from online that one of Anagrelide side effects could cause heart failure. It has been reported . So he stopped taking Anagrelide. It happened to my husband after taking 2 months of Anagrelide . So I wonder if it's just coincidence

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2 replies
lov9 | @lov9 | Mar 16, 2023
In reply to @chetalbin "After two weeks on one pill of HU my eGFR went from 82 to 52. Has..." + (show)
@chetalbin

After two weeks on one pill of HU my eGFR went from 82 to 52. Has anyone else had any similar results. I’m being treated for MPN/ET/JAK2

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I think you need to drink more water. To avoid kidney problem
bec. of the medication.
eGFR is a kidney function test.

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