Essential thrombocythemia

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?

Thank you for sharing—I have experienced shortness of breath lately. I am 72, been on Hydroxie 1/day w2 baby aspirin for a bit over a year. Good to know this side effect.

Good morning, @jroyer. If your shortness of breath is a new symptom that’s really something you don’t want to ignore. It could be a side effect from your meds but it’s worth having checked out by your doctor…just to make sure there’s nothing underlying such as anemia or heart related issues. Not trying to alarm…just looking out for you! ☺️

Actually aspirin can also cause some breathing related issues. I experienced that myself with having to take baby aspirin for many years. I started having asthma-like symptoms which I’d never had before and developed nasal polyps. I found an article that might be worth reading if you’re interested.
https://www.mayoclinic.org/diseases-conditions/asthma/in-depth/aerd/art-20482797
That’s just my 2 cents worth this morning. How frequently do you have labs drawn?

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

Hi Steve, Becky is taking Hydroxyurea which can impact the immune system, possibly making her more susceptible to infections and illness. So it’s important for her to keep up with her vaccinations for influenza and Covid. It may not prevent her from contracting the diseases but it may reduce the severity of the infection if she does.

Some patients with reduced immunity may have a lower response to the vaccinations. But that shouldn’t limit them from receiving the shots. When a person is immune compromised, every bit of protection helps.
I know Becky was just newly diagnosed with ET. The condition is generally slow to develop so she may have had her previous covid shots while living with ET. Did she do well with those vaccinations?

I asked my oncologist this very question last fall.

For me at least, the answer was YES, get the Covid vaccine. It isn't a " live" inoculation and the protection it gives is important.

I was also told flu shots (not live) are recommended -- while nasal flu sprays (live) are not.

The insert that came with my latest HU delivery listed a variety of live shots to be avoided . . . . . interesting!

Of course you know that in our sadly ill-informed world, wild rumors circulate about Covid shots. Fortunately, the evidence of the shots' life-saving benefits is based on solid science.

To be 100% sure, why not make a quick call to your wife's doctor?

I would like to know if anyone has had this happen. I have had essential thrombocytopenia with Jake2 for about two years. I am on a baby aspirin a day and two hydroxyurea. I got Covid, and shortly after that, my blood was checked and it had gone up from 435 to 566. My oncologist has me taking three hydroxyurea twice a week and the rest of the week two per day. My oncologist says that having Covid does not affect my platelets. I have been reading on the Internet that, yes it does. Has anyone out there? Had this happen.?? I would love to hear from you.

Hi there… To answer your question I just had the same thing happen. I had Covid not a very bad case and my platelets went up. My hematologist told me to wait about three weeks and then we would check again which I will do this coming Monday.

Thanks Lori.
Good info and helps us make the decision.
Blood check on Thursday and covid vax a few days after that. She is going to get the covid and flu at different times but will be getting them both and yes, she did fine with previous shots.
Thanks again,
Steve and Becky

Thanks for your response. I have another blood test on oct 9th. I will let you know what my platlets are. Do not want to take morel Hydro than necessary