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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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It is possible! It was terrifying for me, not only throughout the pregnancy, but also for 2 months after, because I was so scared I was going to throw a clot. When I got pregnant, my platelets were anywhere between 650-700. As I progressed in the pregnancy, my platelets continued to trend down to the high end of normal which was definitely a relief. I am now two years after delivery and still have platelets in the high end of normal! I definitely expected them to spike after delivery, as did my hematologist, but we are both very happy that they have stayed lower than what they were prior to pregnancy
That's so encouraging to hear. Thank you for sharing.
I'm so grateful to have stumbled across this group. I'm 40 years old & was recently diagnosed with TB. My blood count is currently at 615 & I get blood work done every 3 months to monitor the progression. There was talk about starting me on medication but after my hematolosist presented my case to a panel she opted to just have me take 2 baby aspirin a day. I've had a lot of stress and anxiety steaming from this diagnosis as I'm still trying to learn what all this means for me. I'm terrified everytime I get bloodwork done and I have to hear the results.
Everything that I've read talks about a 20 year life expectancy. I don't know how to get past that information. I was trying to conceive & suffered 2 miscarriages before the diagnosis & now doctors dont know if the TB caused the miscarriages. I've wanted to have another baby but now with this diagnosis & everything that I'm reading I feel completely lost & overwhelmed. I find myself doing a lot of crying at the thought of not being able to live out a full life. I'm hopeful that processing all of this gets easier with time. Hearing that there's others that have successfully dealt with TB for a long period of time gives me encouragement & hope. Thank you.
It is absolutely an overwhelming diagnosis to receive. I spent many weeks worrying and crying, wondering if my children would find me after throwing a clot somewhere. I taught my then 7 year old how to dial 911 if it ever happened. My hematologist is amazing, and after many visits crying in the office with him, he reminded me that stressing over it will do absolutely nothing for me in the present, and that really the only long term studies on life expectancy after this diagnosis are done on older people anyways, as this is most commonly a diagnosis of older aged individuals. There's really no way of knowing what other conditions they could have had that could have potentially led to a faster death than younger individuals. He explained that studies have not really been done on younger people diagnosed with this, and there is the potential to live a full life if properly managed. As an ER nurse, I see very often how no matter how healthy you are, your life can be taken in a split second by tragic events. I was initially very stuck on the 20 year life expectancy as well, but I try not to dwell on what may happen in a couple of decades and try to live for today. You never know when your time to go is, and I'm not willing to let this take me down any faster. Processing the diagnosis absolutely got better with time for me, and I try not to stress over what I cannot control. Hugs to you ❤️
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1 ReactionI'm nearly 70, but younger women have told me that platelets drop during pregnancy, and many have had perfectly healthy babies and uneventful pregnancies.
However, women with ET do have a higher incidence of miscarriage. I had two miscarriages at age 38. My final pregnancy at age 41 was viable, but I was given vaginal progesterone for several weeks due to bleeding.
Onset of my ET was about age 55, but researchers have discovered that the mutation can be present years or even decades before blood levels are affected. Could pre-symptomatic ET have caused my miscarriages? Unknown. And people with ET have to learn to live with a lot of unknowns.
Obstetricians, even those who specialize in high risk pregnancies, are rarely encouraging because of the ungodly high liability premiums they pay. A woman coming in with a known cancer that might pose high miscarriage and clot risks would be a liability nightmare. If that woman also had healthcare insurance that didn't adequately cover contingencies of a high risk pregnancy, she would also get discouraging info.
It's often more about the money than someone's actual health risks, sadly.
Hi,
We recently found out that my 16 yo daughter has JAK2, very rare and her count is 750. Would you recommend any diet or any life style tips?
Hi Erikaerika…
I have a question. We’re you diagnosed with TB….tuberculosis? Or were you diagnosed with ET….Essential Thrombocytosis?
Eileen
That was a typo. I was diagnosed with ET... I couldn't edit after I had posted.
Thank you for sharing. It's really encouraging to hear others story.
Thank you. I likely need to go back to the high risk OBGYN & ask why this information regarding decrease in platelets wasn't presented to me. Given my ET they discussed starting me on blood thinners during the course of the pregnancy. Needless to say, it was all highly discouraging & I haven't yet made a decision to try again. I do feel the pressure of needing to decide soon given my age and the fact that the hematologists has explained that my platelet count will only continue to increase with time. I'm at a 615 blood count now and not yet on another type of medication other than the aspirin. The ET diagnosis is still relatively new and very scary for me. Feels overwhelming at times. You've had this diagnosis for nearly 15 years. Do you mind sharing about you quality of life. I'm also curious if your on medication and how long you've been on it if you are. Thats another huge piece that's causing anxiety for me.
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