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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bonnieshaffer | @bonnieshaffer | May 20, 2023
In reply to @mjpm2406 "I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays..." + (show)
@mjpm2406

I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays and Fridays. Also a daily 81mg Aspirin. I’ve been on this regimen for five years. My platelet count was easily over 1,000 when I was diagnosed with MDS/MPN-RS-T. On the MPN side my symptoms mirror ET. My platelet numbers now fall in the 300-400 zone so I’m good. Fatigue is an issue but a 30 minute Power Nap every day fixes that problem. Once you get your medicine regimen finalized you’ll probably start feeling better and your Oncologist will most likely stretch out your lab schedule. I used to get labs every two weeks in the beginning. Then once a month after my numbers stabilized. Now I’m on a 6 week schedule.

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I also have MDS/MPN with RS and T.

My platelets shot up to 1,100 in March. Started taking HU 1000 mg a day 7 days a week.

By May my platelets were down to 300. I'm now taking 500mg every other day.

I haven't felt any side effects and am glad the HU worked so well as it is the treatment with the least number of side effects.

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1 reply
crhilston | @crhilston | May 20, 2023

I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?

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2 replies
sregiani | @sregiani | May 21, 2023

While this may be scary for you right now, may we all be so lucky to live 92 healthy years and then some. Blessings for many more good continued days and years!

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shenriq | @shenriq | May 21, 2023
In reply to @mjpm2406 "I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays..." + (show)
@mjpm2406

I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays and Fridays. Also a daily 81mg Aspirin. I’ve been on this regimen for five years. My platelet count was easily over 1,000 when I was diagnosed with MDS/MPN-RS-T. On the MPN side my symptoms mirror ET. My platelet numbers now fall in the 300-400 zone so I’m good. Fatigue is an issue but a 30 minute Power Nap every day fixes that problem. Once you get your medicine regimen finalized you’ll probably start feeling better and your Oncologist will most likely stretch out your lab schedule. I used to get labs every two weeks in the beginning. Then once a month after my numbers stabilized. Now I’m on a 6 week schedule.

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Given your ability to have successfully lowered and stabilized your platelets, why wouldn’t your Dr lower your HU dose?

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1 reply
shenriq | @shenriq | May 21, 2023
In reply to @JustinMcClanahan "Hi @kroolivera. You bring up a valid concern regarding your diagnosis and childbearing. As it just..." + (show)
@JustinMcClanahan

Hi @kroolivera. You bring up a valid concern regarding your diagnosis and childbearing. As it just so happens, I was working on a clotting disorders and pregnancy blog post on our Hematology Connect Page. The story just went live, you can check it out here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-pregnancy-what-you-need-to-know/. While we did not discuss Essential Thrombocythemia directly, you may find some of the information relevant and useful.

@kroolivera, if you don't mind sharing, have you discussed pregnancy with your hematologist?

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Receiving guidance on pregnancy/infertility is a good idea — with your Hematologist-Oncologist and GYN.
From the age of 30, I began to do infertility work, and had a single conception and successful pregnancy almost 8 yrs later. Never once was there any focus on my (elevated) platelets. During those years, I had chronic sinus infections, which coincidentally elevated my platelets.
It’s 35 years later and my ET has been diagnosed and managed. While I’m beyond child bearing and more MDs are aware of ET, I hope that there’s a greater awareness of a correlation between infertility and patients with ET. Additional research and medical education, persistence and courage is all important. I was very lucky.
Good luck to you!

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mjpm2406 | @mjpm2406 | May 22, 2023
In reply to @shenriq "Given your ability to have successfully lowered and stabilized your platelets, why wouldn’t your Dr lower..." + (show)
@shenriq

Given your ability to have successfully lowered and stabilized your platelets, why wouldn’t your Dr lower your HU dose?

Jump to this post

My platelet count has been running between 350 to 400 for the last year. I assume my Oncologist wants to stay with the dosage that works.

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taitorz | @taitorz | May 22, 2023
In reply to @crhilston "I am 92 and just three weeks ago found problems as a result of a routineCBC...." + (show)
@crhilston

I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?

Jump to this post

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant.
Doctor ordered 50mg daily PROMACTA tablets and platelet counts went up significantly in a few months.
God bless you. Take comfort that God is in control and all things are possible with Him.

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1 reply
crhilston | @crhilston | May 22, 2023
In reply to @taitorz "I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant. Doctor..." + (show)
@taitorz

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant.
Doctor ordered 50mg daily PROMACTA tablets and platelet counts went up significantly in a few months.
God bless you. Take comfort that God is in control and all things are possible with Him.

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Thank you and I am happy that you were/are helped significantly. To was told my disease is acute myeloid leukemia' As they say, "Let go and let God."

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Mentor
Lori, Volunteer Mentor | @loribmt | May 23, 2023
In reply to @crhilston "I am 92 and just three weeks ago found problems as a result of a routineCBC...." + (show)
@crhilston

I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?

Jump to this post

Good morning, @crhilston. In another reply you wrote that you’ve recently found out you have acute myeloid leukemia (AML). I also had this diagnosis 4 years ago. I’ll be honest with you, this one is a bugger.
I think this informational article from our Mayo website will help explain what’s happening with your blood better than I’m able to do… Here’s an excerpt:
“Your bone marrow produces blood cells. Acute myelogenous leukemia occurs when a bone marrow cell develops changes (mutations) in its genetic material or DNA. A cell's DNA contains the instructions that tell a cell what to do. Normally, the DNA tells the cell to grow at a set rate and to die at a set time. In acute myelogenous leukemia, the mutations tell the bone marrow cell to continue growing and dividing.

When this happens, blood cell production becomes out of control. The bone marrow produces immature cells that develop into leukemic white blood cells called myeloblasts. These abnormal cells are unable to function properly, and they can build up and crowd out healthy cells.”

https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/symptoms-causes/syc-20369109

While no one can predict your life expectancy with this diagnosis, what I can tell you is that once the abundance of defective, immature cells start outnumbering the healthy cells, if not treated, this condition can develop rapidly.
Taking into account your age, your hematologist may feel that some of the more aggressive treatments aren’t appropriate. But you may want to ask about potential chemo treatments or abrogating drugs that can slow the progression of the proliferating cells.

Illnesses like this can come with a lot of questions so please, don’t hesitate to fire away if anything comes to mind that you’d like to know. I’m here for you anytime.
What has your hematologist discussed with you?

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2 replies
nohrt4me | @nohrt4me | May 23, 2023
In reply to @loribmt "Good morning, @crhilston. In another reply you wrote that you’ve recently found out you have acute..." + (show)
@loribmt

Good morning, @crhilston. In another reply you wrote that you’ve recently found out you have acute myeloid leukemia (AML). I also had this diagnosis 4 years ago. I’ll be honest with you, this one is a bugger.
I think this informational article from our Mayo website will help explain what’s happening with your blood better than I’m able to do… Here’s an excerpt:
“Your bone marrow produces blood cells. Acute myelogenous leukemia occurs when a bone marrow cell develops changes (mutations) in its genetic material or DNA. A cell's DNA contains the instructions that tell a cell what to do. Normally, the DNA tells the cell to grow at a set rate and to die at a set time. In acute myelogenous leukemia, the mutations tell the bone marrow cell to continue growing and dividing.

When this happens, blood cell production becomes out of control. The bone marrow produces immature cells that develop into leukemic white blood cells called myeloblasts. These abnormal cells are unable to function properly, and they can build up and crowd out healthy cells.”

https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/symptoms-causes/syc-20369109

While no one can predict your life expectancy with this diagnosis, what I can tell you is that once the abundance of defective, immature cells start outnumbering the healthy cells, if not treated, this condition can develop rapidly.
Taking into account your age, your hematologist may feel that some of the more aggressive treatments aren’t appropriate. But you may want to ask about potential chemo treatments or abrogating drugs that can slow the progression of the proliferating cells.

Illnesses like this can come with a lot of questions so please, don’t hesitate to fire away if anything comes to mind that you’d like to know. I’m here for you anytime.
What has your hematologist discussed with you?

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Lori, thanks for that info! Everyone with ET runs a slightly elevated risk of progressing to AML, depending on mutation type and other factors still not very well understood. It's why the hematologist monitor all blood levels for ET patients and another reason why it's imp to get blood tests at regular intervals.

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