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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cajunqueen | @cajunqueen | Aug 2 10:36am

Hi ladies! I am 52 and was diagnosed in 2022 with E.T. and after my bone marrow biopsy, I do have the Jack2 mutation. I have been on Hydroxurea for almost 2 years and have had no side effects. I now go every 3 months for lab/blood work....the first year I went every month and only took 1 (500mg) of Hydroxy to see how my body would handle it (in 2022 when diagnosed, my platelets were over 850) and after about 6 months, my platelets were not dropping as much as expected (in the 700 range), so she added 2 (1000 mg) once a week and 1 (500 mg) the rest of the week for 5 more months (stayed in the 650 range). My platelets dropped gradually, so she added 2 (1000 mg) twice a week and 1 (500 mg) the rest of the week for another 6 months and platelets were still higher than expected, but she was making sure adding the dosage was not affecting my body, since it has not, (thankfully), I am now on 2 (1000 mg) 3 x a week with 1 (500 mg) dosage the rest of the week and I am now going every 3 months for labs/Dr visit and my platelets are now in the high 400 range, which is amazing! We are still trying to get them in the 200-400 norm range, but considering I am almost there with this dosage of Hydroxy, I am thankful and blessed. This will be a lifelong med for me, and she may have to adjust every so often how much, depending on how my body is responding to the dosage (like blood pressure meds and those types of meds you have to be monitored because it fluctuates like our platelets), but at least I know that I am as safe as I can be as far as my blood goes, from having a heart attack, stroke or blood clots with Hydroxy! It certainly is a very scary situation to have your body (blood) deceive you in such a way, but thank goodness for our medical professionals and current data that we have these amazing people helping us and guiding us and our bodies to help us on our journey!

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3 replies
winmil99 | @winmil99 | Aug 1 7:55am
In reply to @huronshores "77 year old female, good health, very active. Routine blood test recently turned up high platelets..." + (show)
@huronshores

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.

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have you had a bone biopsy

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jola13 | @jola13 | Jul 31 11:06am
In reply to @chimo "How high were your numbers initially? Good luck with your surgery. Hope it goes well for..." + (show)
@chimo

How high were your numbers initially?
Good luck with your surgery. Hope it goes well for you!

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Nearly a 1000 am now 504 my appt is the 12th August with haemo /onc and waiting to see the anaesthetist. Thank you

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nohrt4me | @nohrt4me | Jul 16 7:21am
In reply to @jola13 "Its taken a year to halve my number’s had to postpone surgery about to find out..." + (show)
@jola13

Its taken a year to halve my number’s had to postpone surgery about to find out if i can go aheadxxx

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Hoping things will get sorted for you soon!

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chimo | @chimo | Jul 15 5:43am
In reply to @jola13 "Its taken a year to halve my number’s had to postpone surgery about to find out..." + (show)
@jola13

Its taken a year to halve my number’s had to postpone surgery about to find out if i can go aheadxxx

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How high were your numbers initially?
Good luck with your surgery. Hope it goes well for you!

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1 reply
mamsgirl1998 | @mamsgirl1998 | Jul 15 2:05am
In reply to @chimo "I’m a bit stressed. So far so good. I’m anxious for the lab results to see..." + (show)
@chimo

I’m a bit stressed. So far so good. I’m anxious for the lab results to see if they will come down. I must be patient for a few more weeks.
It’s been encouraging to hear how everyone has done. Helps my comfort level. Thanks

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I was stressed as well. Once I started the medicine and saw it was working, I felt better.

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jola13 | @jola13 | Jul 14 3:18pm
In reply to @chimo "I’m a bit stressed. So far so good. I’m anxious for the lab results to see..." + (show)
@chimo

I’m a bit stressed. So far so good. I’m anxious for the lab results to see if they will come down. I must be patient for a few more weeks.
It’s been encouraging to hear how everyone has done. Helps my comfort level. Thanks

Jump to this post

Its taken a year to halve my number’s had to postpone surgery about to find out if i can go aheadxxx

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2 replies
chimo | @chimo | Jul 14 1:30pm
In reply to @mamsgirl1998 "I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I..." + (show)
@mamsgirl1998

I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I have ET and no side effects my platelets were over 1 million and now at 389,000. I was scared of Hydrea but it has helped.

Jump to this post

I’m a bit stressed. So far so good. I’m anxious for the lab results to see if they will come down. I must be patient for a few more weeks.
It’s been encouraging to hear how everyone has done. Helps my comfort level. Thanks

REPLY
2 replies
chimo | @chimo | Jul 14 1:25pm
In reply to @biddypoppop "I am very similar to you" + (show)
@biddypoppop

I am very similar to you

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Good for you! Double blessed! The pill is working and no side effects! Ride on!

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biddypoppop | @biddypoppop | Jul 14 8:48am
In reply to @gmacookie "I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day..." + (show)
@gmacookie

I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day since then. They added an additional 500 mg on Monday, Wednesday and Friday.
I have had no appreciable side effects. That being said everyone is different. I also take a baby asprin everyday. I go for labs and see the oncologist about every 4 months.

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I am very similar to you

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