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)

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.

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)

Yes, MN.

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?

et1055 | @et1055 | Jun 17 2:13am

My platelet counts have gone up over the last two years. It is presently at 1054. I went to one haematologist who told me it was because I had my spleen removed in 2014. (Ovarian cancer in 2008, recurrence in 2012, recurrence in 2014 – – in my spleen, so it was removed. I have been cancer free since.) He said because I am taking 81 mg ASA each day that it would stop my blood from clotting so don’t worry about it. My GP sent me for a second opinion. The second haematologist diagnosed me with ET and is putting me on Hydroxyurea.
Now I am very confused and concerned.
This is supposed to be a rare blood cancer?
Any insight and support would be greatly appreciated. Thank you.

janemc | @janemc | Jun 17 9:02am

In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)

Diagnosis is an awful shock -- please know your friends here are sending love and support.

Who has ever even heard of "ET"??? And then to learn that you have something totally different from what you had first been told -- that's an awful lot to deal with.

Yes, ET is a chronic blood cancer. It happens when the "drivers" that regulate platelet production mutate, causing our blood marrow to churn out platelets like mad.

Having extra platelets makes us prone to blood clots, and this manic over-product also depletes our bone marrow.

But don't be discouraged! The low-dose aspirin you've been taking is already protecting you from blood clots. And there are effective medications for ET.

HU is what most of us take. Some ETrs have been on it for decades. It's cheap and it works.

Should you have adverse side effects, some other options exist too.

Finding your effective dose may take a while. Frequent blood draws will be part of the process.

You can learn SO MUCH on this forum. Whatever concerns or issues you may have -- someone else here will share them.

You are not alone!

1995victoria | @1995victoria | Jun 17 9:08am

In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)

I would suggest to get a bone marrow biopsy/aspiration to confirm your diagnosis. With best wishes

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

nohrt4me | @nohrt4me | Jun 17 9:52am

In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)

Might be good to find out what driver mutation you have--JAK2, MPL, or CALR. It makes a difference in treatment protocol. However, if you are over 1,000, you may be at risk for acquired von Willebrand's, a complication that can cause bleeding, so that may be why your doc wants the platelets brought down. Maybe ask doc about this?

My dad had ET. I have ET-CALR. It is not curable, but it is manageable. I have had it for 15 years. Main complication is clots and, if platelets get high enough, bleeding. (Yes, seems contradictory, but everything about ET is kinda weird.)

Yes, most docs consider ET a chronic cancer, but if you take care of yourself, prognosis is pretty good. Dad lived to be 82 and died of something else. Just let all your docs know what you have and be prepared for a lot of blank looks and people telling you, "Well, you don't look sick."

nohrt4me | @nohrt4me | Jun 17 9:59am

In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)

PS, do ask your doc about your immunity levels. All of us have some lessened immunity on hydroxyurea. If you had yr spleen removed that could increase susceptibility to infection? This came up a lot during Covid: just how immunity suppressed are ET patients and what factors make a difference? That seemed to be kind of an unknown.

docoltun | @docoltun | Jun 17 12:00pm

In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)

I've had ET since annual blood work maybe 20 years ago noted platelet count over 1800....my doctor was aghast and immediately sent me to a hematology oncologist. I was offered HU or Angrylin (newer then, now Anagrelide) without a bone marrow test. I recall taking the newer drug as side effects of HU seemed more severe. As long as I take the meds, see my doctor when asked (started with monthly, went to quarterly, then bi-annual, annual, back to twice a year), remember medication when traveling (forgot once, overseas and didn't have enough so appointment the week of return showed increased platelet count), platelet count runs in an acceptable range. Changing to my husband's oncologist in two months (closer, simpler).....hope at 73 he doesn't ask for a bone marrow test! For me, this has been a very liveable condition, not death-defying cancer management.

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