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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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)
@loribmt

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.

Jump to this post

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.

REPLY
1 reply
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)
@jola13

I’m the same I have no energy and get extremely tired went to clear the pond plants today as they had over grown. 10mins was all I managed. I also had to stop my pain meds as Im already on 75mg aspirin and the meds were also aspirin based. I have neuropathic Pain following complicated previous surgeries on my spine. I also have extreme joint pain, so at the moment am in agony. Have been prescribed co-codamol. 3rd week on HU, also take Lyrica, Sertraline. Nothing really helps with the pain - I try to distract myself it is hard.

Jump to this post

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.

REPLY
Mentor
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)
@jola13

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.

Jump to this post

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…

REPLY
1 reply
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)
@loribmt

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…

Jump to this post

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

REPLY
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)
@loribmt

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.

Jump to this post

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

REPLY
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.

REPLY
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.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 17, 2023
In reply to @jola13 "Hi Guys contd.... Didnt sleep last night due to the headache with started at 7p.m -..." + (show)
@jola13

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.

Jump to this post

Wow, what an awful night for you. Let’s hope you get some good direction from the specialist nurse today because you surely don’t want a repeat of that episode.

Have you had routine headaches since starting the HU? Make sure you jot down how often this occurs, if you can think of any triggers such as food, allergies, etc., besides the possible connection to the HU. Seeing that there are others in the forum who have had experience with the headaches it doesn’t seem uncommon for that to happen. However, there can be changes made to lessen the side effects.

This comment from @ontheverge today was timely…with their comment on headache with HU.
https://connect.mayoclinic.org/comment/897146/

Good luck today! I’ll be thinking of you and fingers crossed for no headache!

REPLY
1 reply
jola13 | @jola13 | Jul 17, 2023

Hi Lori Thanks for this and your kind words. I thought it may have been the coffee I’ve run out of de caf beans and am using full roast ones - I also didn’t drink enough yesterday have made up for it today. I also thought it may be that I had a cataract op 19days ago same day I started chemo. Who knows ? I rarely get migraines but this one was more of a thunderclap. I couldn’t talk or put my head on the pillow. I only once had an experience of this when I had a dural tear. It might be all the stress build up too. The nurse did not ring back left two messages. Mondays are very busy Clinic day - that I know. Will chase them tomorrow. Have slight headache now have taken paracetamol. Will keep you updated. Jola 🙂

REPLY
nohrt4me | @nohrt4me | Jul 18, 2023
In reply to @loribmt "Wow, what an awful night for you. Let’s hope you get some good direction from the..." + (show)
@loribmt

Wow, what an awful night for you. Let’s hope you get some good direction from the specialist nurse today because you surely don’t want a repeat of that episode.

Have you had routine headaches since starting the HU? Make sure you jot down how often this occurs, if you can think of any triggers such as food, allergies, etc., besides the possible connection to the HU. Seeing that there are others in the forum who have had experience with the headaches it doesn’t seem uncommon for that to happen. However, there can be changes made to lessen the side effects.

This comment from @ontheverge today was timely…with their comment on headache with HU.
https://connect.mayoclinic.org/comment/897146/

Good luck today! I’ll be thinking of you and fingers crossed for no headache!

Jump to this post

I started writing stuff down, and it helps me spot trends. I also give anything new 10 days to resolve itself before I see a doctor. If I do feel I have to see someone, at least I have something concrete to report. Older women, especially women of color, often get blown off as hysterics or worse unless there is some visible or otherwise measureable ailment.

REPLY
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