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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jola13 | @jola13 | Jul 17, 2023

Hi Guys
contd.... Didnt sleep last night due to the headache with started at 7p.m - Sunday.
Decided to run a bath at 4a,m then got dressed and lay on the bed. I managed to snooze and by 8a.m the pain had gone. I am exhausted and waiting for a call back from my specialist nurse.

nohrt4me | @nohrt4me | Jul 17, 2023

People's experience with HU is really all over the map. Given that those of us in the US can often not afford newer alternatives, it would be great if more docs looked at better dosing strategies and target goals for platelets. There's a lot of blah blah about tailoring cancer care to the individual. It sounds great, but that hasn't filtered down to ET patients. Maybe using some new tricks with an old drug would help a lot of us.

sand103 | @sand103 | Jul 16, 2023

In reply to @loribmt "Hi @jola13 Headaches are so miserable and it sounds like you have a doozy. I looked..." + (show)

No headaches here and I’m on HU 1500 mg 3x week 1000 mg other days.also Full dose aspirin daily

jola13 | @jola13 | Jul 16, 2023

In reply to @loribmt "Definitely give your doctor a call because that headache sounds intense! Not sure if it’s the..." + (show)

I will ,,, this Pain is horrendous ,,,there is no easing ,,its on the right side above eye through to back at end of tether now

Lori, Volunteer Mentor | @loribmt | Jul 16, 2023

In reply to @jola13 "Hi Lori Thanks I read the posts —just… the Pain, is still there .. just woke..." + (show)

Definitely give your doctor a call because that headache sounds intense! Not sure if it’s the hydroxy or not but your doctor may suggest a day or so off just to see if your headaches subside. I think I mentioned it earlier that some patients on HU have had to reduce their dosages to hit a balance between a therapeutic dosage and side effects. I sure hope you get some relief soon! Sending you a hug…

albertedward | @albertedward | Jul 16, 2023

In reply to @jola13 "I’m the same I have no energy and get extremely tired went to clear the pond..." + (show)

I also have no energy as I try and help my son on his new house I spend 10 minutes and then I have to set down and that's it for the day.I take 2 hydroxarea 5 days a week and 1 on weekends.My numbers came way down and hoping they will drop the dose.I am not sure if it is PV or the drugs.But it really disappoints me as I love to work.Good luck to you and will let
You know if there is any change.

jola13 | @jola13 | Jul 16, 2023

In reply to @loribmt "Hi @jola13 Headaches are so miserable and it sounds like you have a doozy. I looked..." + (show)

Hi Lori
Thanks I read the posts —just… the Pain, is still there .. just woke up .. have taken cocodamol 15mg/500mg. Will see if it kicks in. Will call my specialist nurse later this morning. I do suffer from migraines. This pain reminds me of the pain I had after my back op went wrong - after I had a dural leak with meningitis and a subarachnoid haemorrhage. In ICU for a month died 3 times. I have an aversion to bright light even now, so screen turned right down, When I have this sort of Pain I cant talk, move or touch my Head. I have a Valproate melt for emergency use but have to find out if I can use this now.

Lori, Volunteer Mentor | @loribmt | Jul 16, 2023

In reply to @jola13 "I’m in absolute agony my head feels like it’s going to explode - is this the..." + (show)

Hi @jola13 Headaches are so miserable and it sounds like you have a doozy. I looked for other members who are taking HU and it looks like a headache with hydroxyurea can be common side effect.
Here’s the conversation with members @eileen11108. @ontheverge @sand103 @sregiani who’ve experience headaches while on HU.

~JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches
https://connect.mayoclinic.org/discussion/jak2-v617f-essential-thrombocythemia-hydroxyurea-causes-headaches/
Other possible relevant discussions where you might find some useful tidbits such as asking your doctor to reduce your dosage. That seems to be the theme when patients are having aggravating and ongoing side effects.

~People living with ET and taking Hydrea: Anybody setting
https://connect.mayoclinic.org/discussion/anybody-setting-records/
Actually in this discussion group that you’re currently in, this comment was made last week by @eileen11108 about her headaches with HU and the change in doses until her doctor found a balance.
https://connect.mayoclinic.org/comment/892038/
I know reading is probably the last thing you feel like doing right now but I hope these help. If you haven’t, please call your hematologist and talk to them about your headaches. You don’t have to endure those when changes can be made.

jola13 | @jola13 | Jul 16, 2023

In reply to @nohrt4me "I am very sorry that pain is a constant battle. I think ET is one of..." + (show)

I’m in absolute agony my head feels like it’s going to explode - is this the HU has anyone had this ..

nohrt4me | @nohrt4me | Jul 16, 2023

In reply to @jola13 "I’m the same I have no energy and get extremely tired went to clear the pond..." + (show)

I am very sorry that pain is a constant battle. I think ET is one of those things that is manageable on its own, but that complicates other things. I have severe scoliosis along with the bad mitral valve (there's a corrollation, I guess), and yoga helped with back pain. But, honestly, I had to start with just lying in bed in neutral spine position doing deep breathing at first. Can do more now. Took care of the sciatica and pinched nerves. But I still am very bent when walking without a cane, and can't go distances.

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