1. < Blood Cancers & Disorders

Essential Thrombocythemia and stroke: Do you have TIAs?

Posted by klunardi06 @klunardi06, May 5 8:16am

I have been reading posts and haven't seen any which address the relationship of ET and stroke. I have had TIAs and was hospitalized for 48 hours due to stroke 3 years ago. I am on Plavix now but in the back of my mind I think about having another. I live alone and am 80 years old. I take Hydrea 500 MG daily. I am blessed to have lived this long!

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janemc | @janemc | May 9 7:03am
In reply to @bosmac "My doctor has taken time to figure out the problem with my raised platelets. I have..." + (show)
@bosmac

My doctor has taken time to figure out the problem with my raised platelets. I have been seeing my GP since March this year. Several test done. Today he rang me in and told me CARL Exon 9 Mutation and JAk2 V617F Mutation have been detected in my blood sample. He said i have ET but he needs me to do a bone marrow biopsy before he can put me on medication. My platelets have been rising since 2021 and today reading was 848. He asked me to return in 3 weeks time for the bone marrow procedure. In the meantime she put me on 100mg aspirin.

Jump to this post

The first aspirin you took immediately started protecting your cardiovascular system.

This must be a stressful time for you. Please know effective treatment options exist. People have been living (well!) with ET for decades.

All good wishes!

REPLY
2 replies
kapow | @kapow | May 9 10:20am
In reply to @bosmac "My doctor has taken time to figure out the problem with my raised platelets. I have..." + (show)
@bosmac

My doctor has taken time to figure out the problem with my raised platelets. I have been seeing my GP since March this year. Several test done. Today he rang me in and told me CARL Exon 9 Mutation and JAk2 V617F Mutation have been detected in my blood sample. He said i have ET but he needs me to do a bone marrow biopsy before he can put me on medication. My platelets have been rising since 2021 and today reading was 848. He asked me to return in 3 weeks time for the bone marrow procedure. In the meantime she put me on 100mg aspirin.

Jump to this post

When I started on Hydroxyurea my platelets were at 891…. but the drug brought them down right away by 100 points in one week to 790. I had blood tests once a week for 3 months and now have them once a month. Platelets continued the downward trend but much more slowly. I am now back up to 455 after having been as high again as 600, and as low as 375. My monthly draw is scheduled for next week, so I am anxious to see if I am back within normal range. I guess what I am saying though is that platelets can fluctuate even when on medication. But I am grateful for the meds because I don’t seem to have many side effects. ( Maybe just more tired than I used to be….but I am approaching 70 years old too! 😉)

REPLY
1 reply
bosmac | @bosmac | May 9 7:40pm
In reply to @kapow "When I started on Hydroxyurea my platelets were at 891…. but the drug brought them down..." + (show)
@kapow

When I started on Hydroxyurea my platelets were at 891…. but the drug brought them down right away by 100 points in one week to 790. I had blood tests once a week for 3 months and now have them once a month. Platelets continued the downward trend but much more slowly. I am now back up to 455 after having been as high again as 600, and as low as 375. My monthly draw is scheduled for next week, so I am anxious to see if I am back within normal range. I guess what I am saying though is that platelets can fluctuate even when on medication. But I am grateful for the meds because I don’t seem to have many side effects. ( Maybe just more tired than I used to be….but I am approaching 70 years old too! 😉)

Jump to this post

Thanks very much Kapow for your response. It made things clearer for me. Your comment on platelet fluctuations touched me. Mine have been fluctuating too, though am not on medication yet. In February they were 640, March 593 and now in May 848. Looking ahead to the bone marrow being done then put on medication. Doctor said it can be either injection or tablets. I wonder if anyone here is on injections and what are their experiences.
(I am 65 and diabetic plus CKD ).

REPLY
bosmac | @bosmac | May 9 7:44pm
In reply to @janemc "The first aspirin you took immediately started protecting your cardiovascular system. This must be a stressful..." + (show)
@janemc

The first aspirin you took immediately started protecting your cardiovascular system.

This must be a stressful time for you. Please know effective treatment options exist. People have been living (well!) with ET for decades.

All good wishes!

Jump to this post

Thanks very much janemc. That is very reassuring and i needed to hear that . True, very stressed at the moment. I am 65 and diabetic plus CKD
All the best for you too

REPLY
bosmac | @bosmac | May 9 8:09pm
In reply to @janemc "The first aspirin you took immediately started protecting your cardiovascular system. This must be a stressful..." + (show)
@janemc

The first aspirin you took immediately started protecting your cardiovascular system.

This must be a stressful time for you. Please know effective treatment options exist. People have been living (well!) with ET for decades.

All good wishes!

Jump to this post

Thanks very much janemc. That is very reassuring and I needed to hear that
. True, I am very stressed at the moment. I am 65 and diabetic,
hypertensive plus CKD
All the best for you too

REPLY
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