Thank you for following up on and my concerns an “hearing” my concerns and need for information.
I will dive into the link you shared.
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Thanks to you all for sharing.
As you know, I’m looking at ET and vasovagal syncope, as I have both. I’ve had every work up under the sun and on the advice of my Internist,!with whom I met yesterday, I’m now scheduled for a bilateral carotid sonogram on the 16th, to help further understand what’s behind this fainting, whether it’s ET or vasovagal syncope. Dependent on the outcomes, I will next confer with a neurologist. All of this is upsetting, disarming and I’m working not to make myself crazy.
Mostly asymptotic from ET and with Internist now. I’m under care of Oncologist-Hemotoligist and have regular bloodwork and follow ups. I would like to ask you to weigh in on vasovagal syncope and potential triggers for fainting, as originally adkedand how ETfainting might compare. I am one of those asymptotic patients, so with little known about ET, especially since I have no gene mutations, knowledge is power. All help welcome.
Thank you for your counsel.
What causes fainting, for those of us who have ET? I am concerned and am looking for clarification, in order to better understand what’s behind it and if there are triggers. Also, I have suffered from several incidents of vasovagal syncope, which causes fainting. I don’t understand how to differentiate the differences between ET fainting and vasovagal syncope – and desperately need to know. I would appreciate any information you can share to help me cope with this.
I had genetic testing at GW University's Cancer Center. Last summer, I worked with Memorial Sloan Kettering Cancer Center (MSKCC) and an additional panel of advanced genetic tests — 400, were performed, to uncover gene mutations.
To add to my post from 3/1 and address the concerns you posted today, there are 3 significant concerns for those with elevated platelets: blood clots, stroke and heart attack.
Like your son, I am being monitored and taking 1 81mg aspirin daily. This is a great place to be, all things considered. During the course of being monitored and my platelets begin to elevate to a significantly higher rate, then I'd need to begin taking Hydroxeurea, lower my count. Provided HU is effective, it will need to be continued forever, so not needing it is a wonderful thing.
There are a series of genetic tests that can be performed to help determine mutations, as well abone marrow biopsy and aspiration. Depending on the findings, his Hemotologist-Oncologist will likely have him followed, schedule periodic CBCs to track his platelet counts and might also put him on a daily 81mg aspirin. Unsure if he’s had any “episodes,” (clots, strokes or heart attacks), elevated platelets is ofen a wait and watch situation. Many people are a symptomatic, which can be a good thing, but also disarming. A couple years ago, while treating a breast issue, I was formally diagnosed by my Oncologist Hemotologist with Essential Thrombocythemia and fortunately have had no “episodes.” I opted to get additional input from MDs at Sloan Kettering, to mostly get their views on treatment and prognosis. That act was good for my emotional wellness, because blood shows all. There is a ton of information to read, but the condition is rare and not well understood, I keep researching, have joined many ET groups, but have had to remain as calm as possible and take comfort in knowing that I’ve done everything that I can do, so as to not make myself mentally ill behind this hughly uncrertain health challenge.
Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on Interferon? I've worked with 2 hemotologist-oncologists, who made the recommendation of taking Hydroxyurea. Not sure if your daughter wasn't responding to Hydroxyurea? Did she switch to Interferon because Hydroxyurea is a lifetime commitment and Interferon isn't? I would appreciate knowing, understanding that while both drugs directly affect platelets, the Hydroxyurea is known for being well-tolerated, unlike the Intefeuron.
Whatever your daughter's situation, I am hopeful that she can be managed for the long-term.