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ET: untreated elevated platelets for over 13 years
Blood Cancers & Disorders | Last Active: Mar 26 11:22am | Replies (30)Comment receiving replies
lexsjk, I am so sorry for what you have been through.
ET is so rare that our doctors make fools of themselves trying to figure us out.
And being triple-negative makes it even more challenging to get a diagnosis.
Every symptom you're experiencing could be from ET. Shame on whoever "diagnosed" you with anxiety!
While I'm not triple-negative, I too had a delayed diagnosis, as my ignorant PCP had never heard of ET. But once I finally had a diagnosis from an oncologist, HU set me right.
I hope your oncologist has knowledge of MPNs, so that he or she will understand that yes, you can have triple-negative ET. (Ten to fifteen percent of people with ET are TN.) Then treatment options can be discussed.
Many of us take daily aspirin to help our blood flow. Many of us also take HU to reduce platelet over-production. A daily antihistamine can help with breathing and itching.
But we are all different! What works for me might not be good for you.
Hopes high that the new oncologist will know what's best for YOU.
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@janemc thank you so much. It’s such an isolating disease and not really encouraging when neither friends or family nor the medical system believe what you’re telling them. I was first tested for ET in 2022, but then my hematologist retired and the PA I was assigned to did not listen to me or even look at me during the appointment. She even put notes in my chart saying “probably a rheumatology/Derm issue so refer her there for now” and told me to take iron for the fatigue, even though I wasn’t deficient.
I’ve also even been told by an oncologist that “it won’t be ET if you’re under 900k and your 670k isn’t even close to that.” It also makes so many people think that you're a hypochondriac or you’re simply lying about having cancer when the doctors don’t want to take your concerns seriously and leave you untreated in your 20’s but continue to ask for bloodwork every 6 weeks as if that dynamic is “normal.” No one really talks about the stress that comes with the constant rigorous testing alongside the endless loop of waiting for answers for years on end, while your quality of life is diminishing.
Thank you so much. I’m hoping this one will finally be the one that moves forward, even just an inch, in the right direction