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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mamsgirl1998 | @mamsgirl1998 | Jul 13, 2024

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.

gmacookie | @gmacookie | Jul 13, 2024

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.

nohrt4me (Jean) | @nohrt4me | Jul 13, 2024

Re aspirin, ET blood over-produces platelets that are sticky. Aspirin is supposed to make them slipperier. So be aware that if you have heart trouble AND ET (like me), your hemo and cardio people need to be on the same page. My cardio had never heard of ET.

janemc | @janemc | Jul 12, 2024

In reply to @chimo "Thanks once again. I feel lucky that HU seems to be a very safe drug that..." + (show)

Most of us, I'd say, take low-dose aspirin as well as HU.

For me that little pill brings great peace of mind.

chimo | @chimo | Jul 12, 2024

In reply to @janemc "HU = Hydroxyurea. I started taking it after my ET diagnosis in October 2023. Some posters..." + (show)

Thanks once again. I feel lucky that HU seems to be a very safe drug that gets quite good results. Yes, I have also been taking 81mg childrens asperin. I will be sure to ask my hematologist about not taking asperin.

janemc | @janemc | Jul 12, 2024

In reply to @chimo "I appreciate your quick response to my post. Yes, I have been running scared too! What..." + (show)

HU = Hydroxyurea.

I started taking it after my ET diagnosis in October 2023.

Some posters here have been taking it for decades.

While HU is technically "chemo," and side effects ARE possible, happily for most of us this inexpensive, readily-available drug is tolerated well.

HU has been in wide use for quite a while . . . it's also used for sickle cell anemia.

For me, the green-and-pink capsules are a welcome alternative to cardiovascular complications.

Say, were you also advised to take low-dose aspirin?

eileen11108 | @eileen11108 | Jul 12, 2024

Hi Merle,
I am also on Hydroxyurea for ET. I was put on Eliquis about five years ago for Atrial Fibrillation, I am 80 and now a fall risk and started using a cane. I just talked to my cardiologist about possibly switching to aspirin and he said no. I am told I can only take Tylenol.
Best wishes, Eileen

chimo | @chimo | Jul 12, 2024

In reply to @janemc "The answer, I think, is that it varies widely from person to person. I'm on a..." + (show)

I appreciate your quick response to my post. Yes, I have been running scared too!
What drug is HU? How long have you been taking HU? I am happy to hear you have not experienced any side effects. Lucky you!
I will take your advice about taking it after eating and then hydrating we’ll all day

Patty, Volunteer Mentor | @pmm | Jul 12, 2024

In reply to @janemc "Beautifully said! The New York Times had a recent article about the risks of daily low-dose..." + (show)

Yes absolutely. You are wise to research this. Ultimately, our health profiles are each so unique that well-informed, thoughtful analysis will look different for each of us. Will you let me know what you decide?

janemc | @janemc | Jul 12, 2024

In reply to @pmm "True that. My take-away was that for those who are at high risk for stroke or..." + (show)

Beautifully said!

The New York Times had a recent article about the risks of daily low-dose aspirin. Of course no reference was made to its use by those of us with MPNs.

Something I really liked about the Mayo link was the invaluable advice NOT to suddenly stop taking aspirin!

We have to research our options, then consult with our own trusted health care providers. One size doesn't fit all.

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