Essential Thrombocythemia: Looking for information and support

Hi everybody, I'm here like you because i like to know people that is living with ET. I'm 32 years old and I was diagnosed ET 2 years ago. After that I'm taking Hydrea each day. Same @misty45 I have no symptoms. I'm grief because I'm woman and I wonder if I can be pregnant despite my condition. I'm trying to get information with doctors, cases of ET womens that got baby but I don't have certainty if it can be a big risk for me and for my baby. If you have bibliography of science cases let me know. Good luck and i hope we can share our experiences about ET.

For me, ET has meant being on Hydrea for the past 20+ years, getting a cbc every 3 months or so, and checking to make sure I have no spleen enlargement. It is a strange blood disorder because I have no symptoms that I'm aware of, however if I cut back on the Hydrea, then my platelet count zooms back up. So I have had to continue taking it and probably always will. Docs all say I will have a stroke if I don't take it and that if I don't take it, it is at my own peril.

A bit more tired than usual, running to bathroom (bladder) a lot. Not sure what long term effects may be.

Welcome to Connect, @huronshores
Kudos to you for doing your research and advocating for your care. Please report back what you find out after your appointment with the Otolaryngologist.

Do you experience side effects from hydroxyurea?

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.

The decision to opt out of taking the AI meds was a challenging decision. Morphing from one CA treatment issue to another was disarming and forced a dramatic shift in my attention — no emotional capacity to contend with both... and I’m good with that!
Thanks for the support.

@shenriq I can imagine that was a difficult decision. Everyone is different and working with your team to find what decisions are right for you is so important. Quality of life is a massive part of decision making.

No longer taking AI drugs or actively dealing with my breast issues. Additionally, there’s no connection between the Breast concerns and my newly diagnosed (EI) blood cancer.

Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!

The side effects from the AI drugs - of which I've taken all 3 - were difficult and I opted-out! It was an emotional struggle to make that decision, but my quality of life was awful. While Tamoxifen wasn't an option, I did my due diligence and have moved on to another unrelated cancer issue.