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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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.

Jump to this post

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.

REPLY
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.

Jump to this post

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?

REPLY
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.

REPLY
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
1 reply
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

REPLY
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

REPLY
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?

Jump to this post

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

REPLY
jewelfaux | @jewelfaux | Mar 9, 2023

When I was first diagnosed last autumn, my platelets were 760. In a couple of months they dropped to 630 but since have increased to 830. My Hydroxyurea was recently increased to try to bring them down. I'll know soon whether the increased medication is enough. I'm been taking 325mg of aspirin daily since I was diagnosed. I'm 74 years old.

REPLY
1995victoria | @1995victoria | Mar 8, 2023
In reply to @chetalbin "Is it safe to use the Hot Tub when taking Hydroxyurea?" + (show)
@chetalbin

Is it safe to use the Hot Tub when taking Hydroxyurea?

Jump to this post

with ET taking HU, I found my skin got very dry and itchy if I took hot showers, so my showers are less hot now, and my skin not as dry and itchy......my 2 cents
So while hot tub might feel good, your skin might not like it.....

REPLY
cweible19782006 | @cweible19782006 | Mar 8, 2023
In reply to @bj87 "See my post above. I’ve had ET for at least 30 years with no symptoms of..." + (show)
@bj87

See my post above. I’ve had ET for at least 30 years with no symptoms of any sort. I believe it is a cancer but your hematologist will take blood tests and will adjust medication to control platelets and red blood cells. I wonder about chest pains and shortness of breath though. They don’t seem to be symptoms of ET. Good luck and you’ll see it’s not so bad.

Jump to this post

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?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.