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How did you make the final decision to begin HU protocol for ET?
Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have suffered a thrombotic event post-knee surgery in 2021, therefore my MNP specialist ( Hematologist) is recommending I being Hydroxyurea ( HU). I am so hesitant to take it, for many reasons, and trying to connect with others' decision-making process. My doctor did a fellowship with Mayo Clinic, however, I am still considering going to the Mayo clinic for a second opinion. Mainly for a timeline of when I truly HAVE to being HU protocol to reduce risks of stroke, heart attack, and clots. My counts are between 570-680 platelets. I do suffer from headaches, very cold hands, and feet, and tingling in my calves ( I am told this is not related, but I can feel my calf muscles twitching almost all the time. I get fatigued, but I remain very determined to keep healthy movement. I cycle 5 days a week and hike when the weather allows. Mostly, I would like to hear others' experiences from diagnosis to when they started on HU, and what ultimately helped YOU cross the line to treatment. Thank you,
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Thanks, Colleen, The financial officer at the oncology clinic is running numbers and I'll talk to her soon. She did mention she looks into/applies for corporate (pharma) "grants" or assistance. There is also a program through the clinic itself, not for drugs, but I think I won't qualify for that.
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1 ReactionDoctors dismiss what isn't "in the literature." I wish they would at least note these symptoms in rare diseases and then pass them on to researchers to look for commonalities, patterns, and causes. If nothing else, they could tell you that other patients report something similar, no one has established a direct relationship with ET, but it's not in your head. But specialists can be very narrow in their view and very sure about what they think they know.
Fwiw, I have tinnitus all the time. I assumed it was age or possibly jaw issues. I use a brown noise machine at night that helps.
I think we need to get away from the idea that we caused our own disease by eating impure food or having the wrong personalities.
Research suggests that the driver mutations for ET are not themselves inherited, but that we likely inherited a predisposition to mutate when exposed to certain triggers. We lived near a chemical plant that made Agent Orange and napalm before EPA regulations were imposed. Dad and I got ET, but not my mom or brother.
Fwiw, I suspect my biological grandfather had ET. He experienced sudden onset of fatigue in his last year and died of a massive coronary thrombosis at age in 1959, before anybody really knew what ET was.
I have been on medication since 2010. I am 64. I have been taking Hydrea and suggested to take asprin, which I did for a short period of time. Then I stopped after discovering the asprin is not the best to take. I was over 900 and after a decade finally got down to normal between 150-450. I stopped taking HU. Now I am about to go back to gain a blood test to check my readings.
My life style has been up and down over this period. On many occassions I feel fine and able to function very well.
My quality of life has been positive except when I do get tired and fatiqued etc
I found my own positive thoughts helped a lot and having company around talking about everything else but this condition has helped.
Hope this helps a bit. Please stay calm and positive.
This condition is very rare. I have been to over 13 doctors now and many oncologists etc specialist etc and many hospitals.
This was a wonderful, encouraging reply, Thank you.