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.

nohrt4me (Jean) | @nohrt4me | Jun 30, 2023

In reply to @kapow "Thank you for the input. (I find it hard to drink that much but I will..." + (show)

Trick for drinking water: I keep a 32 oz water bottle in the fridge. Every time I walk through the kitchen, I take a good swig. I also pull out the bottle for meals. Once I've drunk two cintainers, my water quota is filled!

jola13 | @jola13 | Jun 30, 2023

In reply to @ortho3 "By blood test or bone marrow biopsy? You are in a good place to get information..." + (show)

Blood test and 2 biopsies. Yes – JAK2 platelet count 893 – 75mg Aspirin and 500mg HU for the next 6weeks- blood check at 2weeks and then at 6weeks.

kapow | @kapow | Jun 29, 2023

In reply to @eileen11108 "Hi @kapow I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2..." + (show)

Thank you for the input. (I find it hard to drink that much but I will try.)

eileen11108 | @eileen11108 | Jun 29, 2023

In reply to @kapow "Hi everyone. I am a 68 year old woman, physically active with controlled asthma. I just..." + (show)

Hi @kapow

I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2 mutation. When you get the bone marrow biopsy results ask your doctor to explain it all,

Make sure you are drinking minimum 64 ounces of fluid daily to help clear toxic effects of Hydroxyurea.

Best wishes on your journey, Eileen

eileen11108 | @eileen11108 | Jun 29, 2023

In reply to @winmil99 "I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and..." + (show)

Hi winmil99,

Welcome to the site. I was diagnosed in June 2022 with platelets at 735. My diagnosis is ET JAK2. I have been on and off 500 mg Hydroxyurea. First it was daily, then every other day, and now only on Monday/Wednesday/Friday. If I have to take HU I hope I can continue taking this way, My next hematologist appointment is July 11 and I will update my lab results.

I greatly understand your hesitation. It is a chemo pill with possible side effects. However, all the alternatives also have side effects. If you need to start on HU I suggest you ask for a slow start. Also, remember to drink minimum 64 ounces of fluid daily to help eliminate the toxicity.

Best wishes, Eileen

kapow | @kapow | Jun 29, 2023

In reply to @loribmt "Hello @kapow and @winmil99. Welcome to Mayo Connect! I thought I’d include both of you in..." + (show)

@loribmt

Hello @kapow and @winmil99. Welcome to Mayo Connect! I thought I’d include both of you in this reply since each of you just recently joined the forum with a new diagnosis of Essential Thrombocythemia.

ET can develop slowly and often people don’t require any medication or treatment initially. However, having too many platelets can cause strokes and other serious issues. So your hematologist will help you decided the best plan of treatment to avoid health risks.
Often the first line of treatment can be a simple daily aspirin to keep the blood thinner. But for some people the risk can be greater and aspirin alone won’t be enough to keep the platelets from sticking together and forming clots.

If the proliferation of cells becomes too high, that’s when medications such as Hydroxurea or other treatments come into play by helping the body to produce fewer cells to keep the balance in check.

The internet is full of rabbit holes that can lead us to anxiety producing sites! Most of it won’t even relate to you so it’s best to steer clear. But, since knowledge is power, I’m posting a few credible informative sites for you to read about your newly diagnosed blood condition.
National Institute of Health:
https://www.nhlbi.nih.gov/health/thrombocythemia-thrombocytosis
Leukemia & Lymphoma Society
https://www.lls.org/myeloproliferative-neoplasms/essential-thrombocythemia
Very well health.com
https://www.verywellhealth.com/treatments-for-essential-thrombocythemia-4058528
We have several members who also share this blood condition where the body makes too many platelets. So you’ve come to the right place to meet up with members @eileen11108, @getti @kto1452 @mortysdad @nohrt4me @dwlowrance @paulhayne and many others.

Here are links to a few of the many discussions on ET where you’ll bump into these members: ~High Platelets https://connect.mayoclinic.org/discussion/high-platelets/

~ How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~High platelet count. What does it mean?
https://connect.mayoclinic.org/discussion/high-platelet-count/
You can also type in ET or Essential Thrombocythemia in the search window above and many more mentions will pop up for you to read.

The 3 of us are very close to the same age. I recently turned 69 and just celebrated my 4th ReBirthday from a bone marrow transplant. I had AML, a very aggressive from of leukemia. To that point I only had Vitamin D in my medicine cabinet and loathed taking any medications! I lived a very ‘clean and healthy’ life but still got a blood cancer. So I can understand any reluctance to take meds. But sometimes they are necessary to restore our health and to keep us active. We start from a new benchmark and go forward. ☺️

@winmil99, your platelet level is 543 and your Hematologist would like you to take HU, @kapow, what was your level when you started the Hydroxurea?

Jump to this post

On June 6 my platelets were at 721, and when I started the hydroxyurea on June 20 they had climbed to 891. (I thought that was quite a jump in 2 weeks time) So I am anxious to hear what they are now after a week on the medication. I had my blood test yesterday, and haven't heard from anyone....I'm assuming that to mean that no change in my dosage is warranted, but I may call tomorrow to find out for sure.

caksv | @caksv | Jun 29, 2023

I have been living with ET - CALR for a year. HU and daily Aspirin. 500 for 5 days 1000 for two days. Dr. wants me below 300 for platelet count. I started at over 800. I finally got below 300 a year later. Only side effects of HU I’ve experienced is sensitivity to the Sun. 70 sunscreen seems to do the trick and hanging out in the shade. I’m 67 and active. I’m concerned about my immune system being compromised especially with Covid becoming endemic. Still wear a mask and avoid indoor gatherings. I feel isolated at times due to this.

1995victoria | @1995victoria | Jun 29, 2023

In reply to @kapow "Hi everyone. I am a 68 year old woman, physically active with controlled asthma. I just..." + (show)

Sounds like your doctors are doing all the right things. At the beginning I also had frequent blood tests to see if HU was doing the job. I also take a baby aspirin. Finally after many ups and downs, I'm on 1,000mg HU and baby aspirin. First year was toughest, my gut didn't like HU, but now it got use to it. My platelets are in normal range and holding.

jroyer | @jroyer | Jun 29, 2023

In reply to @winmil99 "I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and..." + (show)

Similar situation—the drug warnings are enough to scare anyone! I rescheduled a meeting w/Doctor (not LP) who took one hour to explain my diagnosis and prognosis. this really helped me to better understand the Rx options. He did cut the dose in half (LP prescribed 500mg Hydroxyurea daily) so I take 500mg every other day for one month then test to see if it is sufficient for a reduction. I too do not like meds, but better than stroke or heart attack! 😳 BUT, if I die tomorrow I’ve had a great life. I am now focused on my bucket list and trying to keep a sense of humor about it all! 😊 🙏🏼 Best, Jan

jroyer | @jroyer | Jun 29, 2023

I am 71 yo female, reasonably active, recently diagnosed with Jak2, with platelets rising to 750 over 3years. Prescribed 81mg aspirin every day and 500mg Hydroxyurea every other day for a month then test. Goal is slow to 500 range to minimize side affects. I was pretty shocked to read of side effects. Dr explained Rx has to share all side effects—even for high dosages; hopefully I will not experience any side effects at such low dosage. I live Hawai’i so hard to avoid the sun —esp when I worship the sun! Hope this helps. With Aloha, Jan

View More View Less

Please sign in or register to post a reply.