Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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janemc | @janemc | Sep 13 5:11am

In reply to @jbcl "I was recently diagnosed with ET... through blood work and a bone marrow biopsy. I am..." + (show)

Every aspirin helps your blood flow smoothly, every hydroxyurea helps restore balance in your blood marrow.

Keep up the good work!

jbcl | @jbcl | Sep 13 6:03am

Thank you for your encouragement! You are a blessing!!

eloise999 | @eloise999 | Sep 13 7:46am

In reply to @jbcl "I was recently diagnosed with ET... through blood work and a bone marrow biopsy. I am..." + (show)

I have it. I was diagnosed in February. I am on ET. 69 years old. My doctor prescribed HU, I had mild symptoms of the disease that the spring did not address so I went on cytoreduction. I had mild side effects from HU and it has worked fairly fast to bring my platelets down. At the moment I feel very good. Better than before cytoreduction therapy.

jbcl | @jbcl | Sep 13 8:49am

In reply to @eloise999 "I have it. I was diagnosed in February. I am on ET. 69 years old. My..." + (show)

That is good to hear and reassuring!

vickieannb57 | @vickieannb57 | Sep 13 11:13am

On HU since May 2025 random things happen but go away so far. Have days really tired others not so much Doctor put me on Iron and B12 . White cells are normal Red cells are low and platelets 297 at last blood work I am 71 . I think the my age is why I am on HU. My hair has always been thin and I have been on Biotin for years so I take it my hair is a little dryer but no hair loss. Also I have never had any sickness I take 500 mg 1 capsule 7 days a weekly. So far it is just another pill. Biggest thing is going to get blood drawn first weekly then 2 weeks now I go every 4 weeks for CBC only. So not bad at all Good Luck.

lynnebgraham | @lynnebgraham | Oct 13 6:31pm

In reply to @nohrt4me "Please keep in touch about it. We might have something similar going on." + (show)

@nohrt4me
Hi, I got the report back and it says I need to have a FNA which is a needle Biopsy. Don't see Dr till 21st, so another 2 weeks before I can have it done after I see him. Hate this waiting. 😳😳

nohrt4me (Jean) | @nohrt4me | Oct 13 8:46pm

In reply to @lynnebgraham "@nohrt4me Hi, I got the report back and it says I need to have a FNA..." + (show)

@lynnebgraham Thanks. Have been thinking about you. What joy, more waiting. Ugh.

Did you have needle biopsy before or just ultrasound? I had the ultrasound, then same thing as you, FNA referral. I think they did three pokes in diff places. Needle is very thin and pokes were brief. Not bad.

Hope that they can get your results quickly!

I see doc early November and I expect she'll rec another ultrasound to see if mine has changed. We can compare notes.

Hang in there.

lynnebgraham | @lynnebgraham | Oct 13 9:53pm

In reply to @nohrt4me "@lynnebgraham Thanks. Have been thinking about you. What joy, more waiting. Ugh. Did you have needle..." + (show)

@nohrt4me
First was a normal ultrasound second was a Nuclear Ultrasound. Have had FNA previously about 5 years ago. First one was with anaesthetic, was okay. Next time, the Dr came into room and said, I do not do anaesthetic, and it was the most uncomfortable feeling ever. Felt like he was pushing his fist from the front of my throat through to the back, very painful. Will check prior to booking next one, that I get anaesthetic. Previously all were okay, however, it has been 4 years since,and the nodules have grown. Thankyou, yes we seem to be going through the same things. Hanging there 🙃🙃

nohrt4me (Jean) | @nohrt4me | Oct 14 6:57am

In reply to @lynnebgraham "@nohrt4me First was a normal ultrasound second was a Nuclear Ultrasound. Have had FNA previously about..." + (show)

@lynnebgraham Well, geez, yes, make them give you anesthesia. Who needs to be worried AND throat punched??

lynnebgraham | @lynnebgraham | Oct 14 8:06pm

In reply to @nohrt4me "@lynnebgraham Well, geez, yes, make them give you anesthesia. Who needs to be worried AND throat..." + (show)

@nohrt4me Will definitely ask, feela bit overwhelmed with it all. Hopefully get some more and extra Tuesday after seeing my Dr. We are together in this 🤗

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