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.

Patty, Volunteer Mentor | @pmm | Jul 11 11:11am

In reply to @wisner "I was diagnosed with ET 2020 when I was 86 and have been on hydrox for..." + (show)

@wisner
I had a similar conversation with my PCP and hem/onc docs about baby aspirin. The recommendations have changed over the years. Here’s what Mayo has to say.
https://www.mayoclinic.org/diseases-conditions/heart-disease/in-depth/daily-aspirin-therapy/art-20046797

chimo | @chimo | Jul 11 2:05pm

I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards a person could experiences side effects? …. If a person has that problem. Hope I don’t have any; I’m just curious. Thank you!

janemc | @janemc | Jul 12 7:03am

In reply to @chimo "I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards..." + (show)

The answer, I think, is that it varies widely from person to person.

I'm on a fairly high dose of HU (ten 500 mg capsules / week). Other than scaring myself silly about taking the first capsule, I haven't had any side effects at all.

From postings here, I learned to never take HU on an empty stomach, and that drinking plenty of water during the day is beneficial.

This is the perfect place for your questions and concerns -- someone here will have good advice for you!

janemc | @janemc | Jul 12 7:10am

In reply to @pmm "@wisner I had a similar conversation with my PCP and hem/onc docs about baby aspirin. The..." + (show)

Thank you for providing that link -- lots of good information there!

May I note, though, that the discussion is of aspirin use by the general population, rather than by those of us with MPNs.

Patty, Volunteer Mentor | @pmm | Jul 12 7:33am

In reply to @janemc "Thank you for providing that link -- lots of good information there! May I note, though,..." + (show)

True that. My take-away was that for those who are at high risk for stroke or heart attack there is efficacy in low doses of aspirin but otherwise, benefits may not outweigh the risk. We each have to have accurate assessment of risk and benefit.

janemc | @janemc | Jul 12 7:43am

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.

Patty, Volunteer Mentor | @pmm | Jul 12 7:50am

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?

chimo | @chimo | Jul 12 8:16am

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

eileen11108 | @eileen11108 | Jul 12 8:23am

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

janemc | @janemc | Jul 12 8:23am

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?

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