How did you make the final decision to begin HU protocol for ET?

It's so encouraging to hear your story. I am 40 years old & was recently diagnosed. I have the Jack2 mutation. This whole experience has been terrifying for me. I'm currently on 2 baby aspirin & get blood work done every 3 months. My blood count is currently at 615. I've had 2 miscarriages prior to this diagnosis & doctors don't know if they were caused by the TB. I want another baby but I'm scared. I've talked to a high risk OBGYN & they don't seem to be very encouraging. My hemotologist thinks it's possible to do it. Although she thinks the pregnancy may cause a spike in blood count. Hearing your story gives me some hope that it's possible. I am however in my 40s so that might change things for me. Thank you for sharing.

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

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.

I'm JAK2 positive as well, and have had high platelets since my 30s. I'm now 64. Because my platelets are now near 1 million and my other blood counts are haywire, the oncologist is recommending, rather cavalierly in tone, HU. I have had visual migraines on an off all these decades, but otherwise am basically asymptomatic. I really don't want to start HU because I'm afraid I'll actually feel worse on it, and I'm horrified at the whole concept of chemo drugs and the trouble they may bring down the road. Seems so crude a method. (Is the devil I know better?) I have not had clots and so forth, but I'm still obviously in a high risk category, despite good cholesterol and blood pressure, long time vegetarian, walker, etc. I have a video appointment at the Mayo in a few weeks. After the turn of the year, MAYO said, one would have to go to MN for a second opinion. In short, I'm very conflicted and on hold. I cancelled my December blood test. Need to think and learn more! Currently being treated by an acupuncturist/TCM herbalist, and hoping for clarity as the year turns. Thanks to all for their stories; I'm devouring them!

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.

Hi Erikaerika…

I have a question. We’re you diagnosed with TB….tuberculosis? Or were you diagnosed with ET….Essential Thrombocytosis?
Eileen

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 ❤️

I'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.