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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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nohrt4me | @nohrt4me | Mar 17, 2023
In reply to @lov9 "My husband was diagnosed w/ ET. It's been 4 years. His RBC and Hgb are low...." + (show)
@lov9

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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I am sorry your husband has had heart trouble. I have a bad heart mitral valve, and asked my cardiologist to tell me whether anagrelide or hydroxy would work better for me due to heart issues.

He reviewed side effects and said hydroxy because anagrelide does cause some heart problems in some ET patients.

Many patients are fine on anagrelide, but oncologists probably should be more alert to those cardiac side effects. It seems to be pretty common.

Whether the anagrelide caused or aggravated your husband's problems is something his cardio and oncologist could discuss. If you can get them to. Specialists can have a lot of tunnel vision and are sometimes not inclined to go outside their bailiwick.

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Mentor
Lori, Volunteer Mentor | @loribmt | Mar 17, 2023
In reply to @jewelfaux "Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2..." + (show)
@jewelfaux

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2 positive. I am taking a 1000 mg of HU a day. My platelets were 700 but this higher dosage I hope will improve that. I've never had a bone marrow test.

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Hi @jewelfaux A bone marrow test is a valuable tool for your hematologist. Since you have a blood disorder, a bone marrow biopsy (and exam) (BMBX) goes right to the blood manufacturing center of your body. A small sample of your marrow and the surrounding peripheral blood will be analyzed and examined to give your doctor a clear view of the health of your bone marrow, its ability to form healthy blood products and also check the condition of your specific blood cells.
You can often choose to have this done under a general anesthesia similar to what’s used in a colonoscopy. I’ve had 13 bmbx done…3 without anesthesia and 10 with…for the record, I’ll always have anesthesia from now on. 😉 It’s a fairly quick procedure with very little discomfort after.

Has your doctor recommended a biopsy for you?

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2 replies
jewelfaux | @jewelfaux | Mar 17, 2023

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2 positive. I am taking a 1000 mg of HU a day. My platelets were 700 but this higher dosage I hope will improve that. I've never had a bone marrow test.

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1 reply
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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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

REPLY
2 replies
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
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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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
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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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.

REPLY
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