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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ontheverge | @ontheverge | Jun 16 6:40am
In reply to @janemc "Most of us will be our PCPs first (and only) ET patient. Doctors just aren't tuned..." + (show)
@janemc

Most of us will be our PCPs first (and only) ET patient. Doctors just aren't tuned into the significance of elevated platelets. My own PCP, an experienced and caring man, "informed" me my platelet count was high because I made Red Cross blood donations every 8 weeks.

Of course this wasn't true. But it took me 3 years to start questioning him. I live in rural VA and am lucky there's a hematologist/oncologist (Dr Raymond Cruz) just 60 miles away.

It's essential to keep pushing until you find the best help you can get.

Bravo on making that Mayo appointment. Fingers crossed you'll get backup referrals too. You live in MN, right?

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My PCP in rural Mississippi urged me to see a hematologist when my CBC on routine annual labwork showed an increase in platelets which was not that far out of the normal range. Fortunately the oncologist/hematologist I'd seen for breast cancer was very familiar with ET and diagnosed the JAK2 mutation with a bone marrow biopsy.

REPLY
cindy7 | @cindy7 | Jun 16 11:07am
In reply to @janemc "Most of us will be our PCPs first (and only) ET patient. Doctors just aren't tuned..." + (show)
@janemc

Most of us will be our PCPs first (and only) ET patient. Doctors just aren't tuned into the significance of elevated platelets. My own PCP, an experienced and caring man, "informed" me my platelet count was high because I made Red Cross blood donations every 8 weeks.

Of course this wasn't true. But it took me 3 years to start questioning him. I live in rural VA and am lucky there's a hematologist/oncologist (Dr Raymond Cruz) just 60 miles away.

It's essential to keep pushing until you find the best help you can get.

Bravo on making that Mayo appointment. Fingers crossed you'll get backup referrals too. You live in MN, right?

Jump to this post

Yes, MN.

REPLY
klcc | @klcc | Jun 16 10:21pm
In reply to @cindy7 "I’m new to this group and appreciate reading both the new and older posts. The first..." + (show)
@cindy7

I’m new to this group and appreciate reading both the new and older posts.
The first time I was aware of an elevated platelet count was in 1989 after lab work during a prenatal visit. My Ob/GYN called and asked me to come back for another blood draw He wanted to rule out leukemia. After the second blood draw, he advised that nothing else flagged, and this was probably my “normal”.
In the years that followed, I never gave it a second thought. When I had blood draws for routine health visits, my platelet count was always in the low to mid 400’s. I wonder why my general practitioner did not alert to those numbers?
Fast forward to 2016…I started a weight management program that was led by a young doctor within my medical group. (Interestingly, she is also an OB/GYN.) As part of the program, she asked all participants to complete a very comprehensive lab work-up. After reviewing the results with me, she looked very serious and wanted to add a blood smear to my tests.
That’s when I received the news, ET. How many years have I had this and no one else connected the dots?
I was referred to a hematologist at the Mayo in Rochester, MN. The bone marrow biopsy confirmed ET with JAK-2 mutation. Like most of you, I was shaken with anxiety and worry. Knowledge is my way of dealing with it. I read every medical article related to MFP published in past 8 years to educate myself. Additionally, I learned that women with ET have a higher incidence of miscarriage. Checked that box 6 times! Did anyone else experience similar problems? Now, I realize how fortunate I am to have given birth to two healthy, wonderful children.
For the next 2 years, I added a low dose aspirin to my daily routine and had the platelet count checked every 3 months. The numbers stayed between 450-470. Since it was stable, I opted to only have the blood draws 1x/yr.
Just recently, the count increased to 570, so I’m scheduling an appt again at Mayo for a review and medical advice. If anyone is willing to share names/locations of your expert medical providers, I would be interested to hear. I always like to keep a second name “in my back pocket” should my specialist relocate or retire.

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I have a hematologist in Maple Grove/Robbinsdale that I like very much. Are you living in that part of Minnesota?

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1995victoria | @1995victoria | Jun 17 9:11am

Good that you had BMB and aspiration. I would ask for quarterly blood test to make sure your platelets stay within range......all the best wishes

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