1. < Blood Cancers & Disorders

Essential thrombocythemia

Posted by Tessa @tessa, Nov 12, 2011

I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.

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kbc | @kbc | Oct 2 6:59am
In reply to @bshattuck138 "Hi again Lori or anyone else that has input. My wife, Becky, who has recently been..." + (show)
@bshattuck138

Hi again Lori or anyone else that has input.
My wife, Becky, who has recently been diagnosed with ET and is having bi-weekly blood tests to check on the dosage of hydroxyurea that she is on is on the verge of getting an updated with the covid vaccine. Just wondering if anyone out there has done any research on the safety of the vaccine in regards to people with ET. I've been checking and haven't found anything definitive so she will probably get the vaccine after her next couple of blood tests to make sure the hydroxy is working with no side effects.
Many thanks,
Steve

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I have no idea if this timeline of events was a coincidence or what but thought I’d share but this is my history:

Covid vac #1 on 3/16/21
Covid vac #2 on 4/13/21
Covid booster on 12/16/21
Diagnosed w/E.T. on 1/26/22

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1 reply
Rhonda Gregory | @rjgregory440 | Oct 2 10:09am
In reply to @kbc "I have no idea if this timeline of events was a coincidence or what but thought..." + (show)
@kbc

I have no idea if this timeline of events was a coincidence or what but thought I’d share but this is my history:

Covid vac #1 on 3/16/21
Covid vac #2 on 4/13/21
Covid booster on 12/16/21
Diagnosed w/E.T. on 1/26/22

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Covid vaccines do not raise your platelet levels. Having Covid can raise platelet levels temporarily while you still have the infection. As far as any current research shows neither Covid nor the vaccine cause ET.

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Tessa | @tessa | Oct 2 11:12am
In reply to @loribmt "Good morning, @tessa. Thirteen years have flown by since you first posted this new discussion about..." + (show)
@loribmt

Good morning, @tessa. Thirteen years have flown by since you first posted this new discussion about being diagnosed with ET. You were 27 at the time and hesitant to start taking meds for the condition. After a followup consult with Mayo, at that time you only required aspirin to reduce the possibility of blood clots from having the increased platelet level. There was understandably a concern about wanting to have children if you were taking the Hydroxyurea.
Would you be willing to share how life has been over the past decade? Have you been able to raise a family? Has your ET diagnosis/treatment changed over this time period?

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Time sure does go fast at times. I ended up only taking aspirin for the ET and went on to have 3 healthy kids. Unfortunately in 2023 my symptoms started changing and I had a BMB that showed that I had progressed to MF. March of 2024 I had a SCT at Mayo Clinic for which I am still working my way through. It has been quite a ride. Had many years with no symptoms or issues then things went downhill fast. I am hopeful this SCT will ramp up and I will get back to life with my kids and husband.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 2 11:33am
In reply to @tessa "Time sure does go fast at times. I ended up only taking aspirin for the ET..." + (show)
@tessa

Time sure does go fast at times. I ended up only taking aspirin for the ET and went on to have 3 healthy kids. Unfortunately in 2023 my symptoms started changing and I had a BMB that showed that I had progressed to MF. March of 2024 I had a SCT at Mayo Clinic for which I am still working my way through. It has been quite a ride. Had many years with no symptoms or issues then things went downhill fast. I am hopeful this SCT will ramp up and I will get back to life with my kids and husband.

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Hi Tessa, Wow, you’ve had quite a story to write over the years! Congratulations on your SCT! I’m post 5 years on my SCT and doing fabulous. In fact, I’m just on our way to Rochester today for my annual check-in with my transplant Doctor.
You’re a relative newbie yet. We have quite a growing ‘club’ here in the forum with those of us who have had BMT/SCT for various reasons. Would love to invite you over to this discussion:
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

Another fun discussion is this one: Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

I hope you’ll join us over on those posts. You’ll meet @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @dwolden @graycoose @katgob @mary612 and many other members who have had their transplants or are caregivers for family members. Some of us have 10+ years beyond transplant and others are newbies too!
It takes time and patience during recovery. Energy and stamina slowly return and you start getting your life back to a level of normalcy. It’s challenging, especially with having a family to raise. Hang in there. It gets better! Thank you for checking in!
Where you at Mayo-Rochester?

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1995victoria | @1995victoria | Oct 2 3:01pm
In reply to @bshattuck138 "Hi again Lori or anyone else that has input. My wife, Becky, who has recently been..." + (show)
@bshattuck138

Hi again Lori or anyone else that has input.
My wife, Becky, who has recently been diagnosed with ET and is having bi-weekly blood tests to check on the dosage of hydroxyurea that she is on is on the verge of getting an updated with the covid vaccine. Just wondering if anyone out there has done any research on the safety of the vaccine in regards to people with ET. I've been checking and haven't found anything definitive so she will probably get the vaccine after her next couple of blood tests to make sure the hydroxy is working with no side effects.
Many thanks,
Steve

Jump to this post

my oncologist recommended covid shots (I've had 6 over the last 3 1/2 years), also enhanced flu and this year RSV. Only reaction to ET was from 2nd shingles shot, unexpectedly platelets plummeted, and then I had to have frequent blood tests to see if it was from shot or something more serious, luckily from the shot.

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bshattuck138 | @bshattuck138 | Oct 2 3:42pm

Hi. From what I understand, reactions are apt to come from any vaccines that contain live virus and shingles is one of the vaccines that fit into that category. Another is the nasal flu vaccine. Covid and flu shots have inactivated virus.
Thanks for your input, it's all appreciated.
Steve (and Becky)

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1 reply
lynnevb | @lynnevb | Oct 2 7:51pm

Hello Everyone,

I am 70yo and have had ET from the past 22 years. (triple negative). I was on 81 mg of aspirin for the first 11 years and the hydrea and aspirin for the past 11 years. I have had the flu vaccine every year since they started giving them and have not had any problems. I have recieved the pneumonia vaccines with no problems. I have received 6 covid vaccines in total without any problems. I have had COVID 3 times but all relatively mild cases.
My question is . What are the experts opinions on the shingles vaccine and the RSV vaccine if you have ET and on aspirin and hydrea. I plan to ask my oncologist through the portal but I wanted to get some input here first. I will let you all know later what he says. Thanks

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1 reply
1995victoria | @1995victoria | Oct 3 9:34am
In reply to @bshattuck138 "Hi. From what I understand, reactions are apt to come from any vaccines that contain live..." + (show)
@bshattuck138

Hi. From what I understand, reactions are apt to come from any vaccines that contain live virus and shingles is one of the vaccines that fit into that category. Another is the nasal flu vaccine. Covid and flu shots have inactivated virus.
Thanks for your input, it's all appreciated.
Steve (and Becky)

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Shrinrix is not a live vaccine. Shingrix is currently the only shingles vaccine available in the U.S. It’s recommended as a two-dose series for adults ages 50 and older. Adults ages 19 and older with a weakened immune system are also eligible for Shingrix.

Shingrix is not a live vaccine. Instead, it contains pieces of the virus that causes shingles. Zostavax was a live shingles vaccine that’s no longer available in the U.S.

Shingrix is more than 90% effective at preventing shingles and its complications in adults with healthy immune systems. Protection from the vaccine has been shown to last for at least 10 years.

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1995victoria | @1995victoria | Oct 3 9:36am

I was listening to a UK Doctor discussing tattoos and possible link to blood cancers. I don't have any tattoos but I have ET, would be interested to hear your experience. Thanks

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