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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nohrt4me | @nohrt4me | May 6 7:57am

Bless you! I am 70, diagnosed with ET-CALR 15 years ago. No strokes or clots, but the possibility is always a factor. Hoping to learn from you. What's your living situation like? My husband is still alive but had a heart attack 3 years ago. Any advice as we contemplate selling our family home and looking for a senior apartment.

REPLY
vch | @vch | May 6 8:54am

I am in my early 50's and was considered to be healthy until in 2021 after taking Covid vaccine I have been having high platelet issues. My suspicion then and now is that this issue is as a result of taking the vaccine despite my haematologist telling me otherwise. What can I do to rectify this issue as the medication I am on since then is now suppressing my red and white blood cell count. The dosage was reduced however the platelet is sky rocketing once again?

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kapow | @kapow | May 7 7:48pm

I am a 69 year old female. I had a small stroke last April (a year ago) that caused my whole right side to become numb and useless, and when they did a CT Scan it was discovered that I had a humungous blood clot in my carotid artery. I had surgey to remove the clot, but the doctor upon reviewing my blood work discovered that my platelets had been on the rise for a few years. He sent me to a haematologist to be tested for an MPN and after having a biopsy and genetic testing done, it was discovered that I indeed had ET with MPL mutation. I have been on Hydroxyurea and aspirin since then. My dosage of hydroxyurea has been modified 3 times depending on results of blood tests. I currently take 500 mg Monday thru Friday and 1000 mg on Sat & Sun. I also had a couple of episodes with severe chest pains in March of this year that, after a multitude of tests, and a 10 hour spell of Atrial Fibrilation, was diagnosed as pericarditis, so I have been put on other drugs including Eloquis (a blood thinner) which has replaced the low dose aspirin. Other drugs include Flecainide and Metoporol which I understand lower blood pressure and heart rate.

Oh, and btw I luckily have no residual effects from the stoke. I am now back to walking longer distances ( I did almost 10 km today according to my firbit) and hope to be able to start back to my regular exercise routines with Barre Pilates and Tabata, but my doctor has to approve these activities first.

I don't know if this is too much information, but I just wanted to let you know that there can be life after small strokes and TIA's.

REPLY
3 replies
1995victoria | @1995victoria | May 8 6:11am

just curious how long you've been taking HU? Do you have periodic blood tests, are your platelets under control. Since you're on Plavix I'm assuming it was an ischemic stroke, not a hemorrhagic stroke. Have you also been taking aspirin along with your HU? I hope you don't mind my questions, but I've been on HU for 3 1/2 years now along with aspirin and still worry about stroke.

REPLY
janemc | @janemc | May 8 7:02am
In reply to @kapow "I am a 69 year old female. I had a small stroke last April (a year..." + (show)
@kapow

I am a 69 year old female. I had a small stroke last April (a year ago) that caused my whole right side to become numb and useless, and when they did a CT Scan it was discovered that I had a humungous blood clot in my carotid artery. I had surgey to remove the clot, but the doctor upon reviewing my blood work discovered that my platelets had been on the rise for a few years. He sent me to a haematologist to be tested for an MPN and after having a biopsy and genetic testing done, it was discovered that I indeed had ET with MPL mutation. I have been on Hydroxyurea and aspirin since then. My dosage of hydroxyurea has been modified 3 times depending on results of blood tests. I currently take 500 mg Monday thru Friday and 1000 mg on Sat & Sun. I also had a couple of episodes with severe chest pains in March of this year that, after a multitude of tests, and a 10 hour spell of Atrial Fibrilation, was diagnosed as pericarditis, so I have been put on other drugs including Eloquis (a blood thinner) which has replaced the low dose aspirin. Other drugs include Flecainide and Metoporol which I understand lower blood pressure and heart rate.

Oh, and btw I luckily have no residual effects from the stoke. I am now back to walking longer distances ( I did almost 10 km today according to my firbit) and hope to be able to start back to my regular exercise routines with Barre Pilates and Tabata, but my doctor has to approve these activities first.

I don't know if this is too much information, but I just wanted to let you know that there can be life after small strokes and TIA's.

Jump to this post

You have been through so much. Thank you for sharing your encouraging story.

I too have the MPL driver . . . have been told it's difficult to rein in. I'm up to 10 500mg HU capsules/week.

Warmest good wishes to you.

REPLY
1 reply
nohrt4me | @nohrt4me | May 8 7:54am
In reply to @kapow "I am a 69 year old female. I had a small stroke last April (a year..." + (show)
@kapow

I am a 69 year old female. I had a small stroke last April (a year ago) that caused my whole right side to become numb and useless, and when they did a CT Scan it was discovered that I had a humungous blood clot in my carotid artery. I had surgey to remove the clot, but the doctor upon reviewing my blood work discovered that my platelets had been on the rise for a few years. He sent me to a haematologist to be tested for an MPN and after having a biopsy and genetic testing done, it was discovered that I indeed had ET with MPL mutation. I have been on Hydroxyurea and aspirin since then. My dosage of hydroxyurea has been modified 3 times depending on results of blood tests. I currently take 500 mg Monday thru Friday and 1000 mg on Sat & Sun. I also had a couple of episodes with severe chest pains in March of this year that, after a multitude of tests, and a 10 hour spell of Atrial Fibrilation, was diagnosed as pericarditis, so I have been put on other drugs including Eloquis (a blood thinner) which has replaced the low dose aspirin. Other drugs include Flecainide and Metoporol which I understand lower blood pressure and heart rate.

Oh, and btw I luckily have no residual effects from the stoke. I am now back to walking longer distances ( I did almost 10 km today according to my firbit) and hope to be able to start back to my regular exercise routines with Barre Pilates and Tabata, but my doctor has to approve these activities first.

I don't know if this is too much information, but I just wanted to let you know that there can be life after small strokes and TIA's.

Jump to this post

Thank you for sharing that. Really good to hear there is life after stroke.

MPL is pretty rare. I am CALR+. They tell me that that "flavor" of ET has slightly better outcomes. Higher platelets but fewer stroke incidents.

Just for fun, my vet friend tells me that dogs get ET, but seems to be a benign condition in canines that doesn't cause the clot issues it does in people.

REPLY
1 reply
kapow | @kapow | May 8 12:04pm
In reply to @janemc "You have been through so much. Thank you for sharing your encouraging story. I too have..." + (show)
@janemc

You have been through so much. Thank you for sharing your encouraging story.

I too have the MPL driver . . . have been told it's difficult to rein in. I'm up to 10 500mg HU capsules/week.

Warmest good wishes to you.

Jump to this post

The MPL mutation seems to be the rareist of the 3 known drivers....so it is nice to meet another rarity! 😉

REPLY
janemc | @janemc | May 8 12:15pm

I feel the same way! At first I felt like I was the only MPL ETr in the universe.

I so admire your determination to stay fit. Keep up the good work!

REPLY
bosmac | @bosmac | May 9 4:48am
In reply to @kapow "I am a 69 year old female. I had a small stroke last April (a year..." + (show)
@kapow

I am a 69 year old female. I had a small stroke last April (a year ago) that caused my whole right side to become numb and useless, and when they did a CT Scan it was discovered that I had a humungous blood clot in my carotid artery. I had surgey to remove the clot, but the doctor upon reviewing my blood work discovered that my platelets had been on the rise for a few years. He sent me to a haematologist to be tested for an MPN and after having a biopsy and genetic testing done, it was discovered that I indeed had ET with MPL mutation. I have been on Hydroxyurea and aspirin since then. My dosage of hydroxyurea has been modified 3 times depending on results of blood tests. I currently take 500 mg Monday thru Friday and 1000 mg on Sat & Sun. I also had a couple of episodes with severe chest pains in March of this year that, after a multitude of tests, and a 10 hour spell of Atrial Fibrilation, was diagnosed as pericarditis, so I have been put on other drugs including Eloquis (a blood thinner) which has replaced the low dose aspirin. Other drugs include Flecainide and Metoporol which I understand lower blood pressure and heart rate.

Oh, and btw I luckily have no residual effects from the stoke. I am now back to walking longer distances ( I did almost 10 km today according to my firbit) and hope to be able to start back to my regular exercise routines with Barre Pilates and Tabata, but my doctor has to approve these activities first.

I don't know if this is too much information, but I just wanted to let you know that there can be life after small strokes and TIA's.

Jump to this post

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.

REPLY
2 replies
janemc | @janemc | May 9 7:01am
In reply to @nohrt4me "Thank you for sharing that. Really good to hear there is life after stroke. MPL is..." + (show)
@nohrt4me

Thank you for sharing that. Really good to hear there is life after stroke.

MPL is pretty rare. I am CALR+. They tell me that that "flavor" of ET has slightly better outcomes. Higher platelets but fewer stroke incidents.

Just for fun, my vet friend tells me that dogs get ET, but seems to be a benign condition in canines that doesn't cause the clot issues it does in people.

Jump to this post

That dogs get ET is fascinating!!! Do their driver proteins mutate, I wonder, or is this spontaneous?

So much is unknown about the MPNs.

REPLY
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