Anyone living with Essential Thrombocythemia with JAK2?

@janemc Hey there. So I had the ugly red bruises and bleeding prior to dx and that was the reason I initially sought treatment. Dx with Jak2-ET August 2025 and started aspirin. Fast forward through breast cancer treatment, and started HU on March 30. My body went into shock so waiting on another med. I have had the weirdest things happen to me because of my ET. I had an arterial clot in my calf in 2023 after a hysterectomy. I am ‘allergic’ to everything but told that I have no allergies. I break out in hives spontaneously. My knuckles turn bright red randomly. Oh and all of my hair is breaking off. Because I want to look as bad as I feel. I have constant congestion and periodic itching but I will say the easy bleeding was better the 30 days I was on HU. My onc is also a breast cancer specialist and wants me to let him treat my MPN even though I requested a specialist. My counts aren’t even that high, so what the hell.

@mdramsey48

Oh you've been through the wringer, mdramsey. I am so sorry.

Do you know, with ET you can be allergic to your own platelets? They are so misshapen that they can trigger our immune response. Have you tried taking an antihistamine to reduce your itching and congestion?

Well . . . if the breast cancer specialist is your only option, that's better than nothing.

But an oncologist/hematologist would be preferred. And an oncologists specializing in MPNs would be the gold standard.

My challenges pale in comparison to yours, but still I'll say that for a couple of years, life was scarcely worth living for me. I was exhausted and blinded by terrible headaches.

Once HU began to bring down my platelet count, the relief was immense.

I hope that you too will benefit from HU! To better days ahead!

I did not know that! I have taken antihistamines off and on for years and
it does help somewhat. I started HU 30 days ago and it helped with bleeding
but I had such a bad reaction I can’t take it. Waiting for my next option.
I asked to see an MPN specialist but my breast cancer specialist is also a
hematologist and he asked me to give him 6 months.

I’m so glad you are doing well! Thank you for the information ❤️

@janemc Hey there. So I had the ugly red bruises and bleeding prior to dx and that was the reason I initially sought treatment. Dx with Jak2-ET August 2025 and started aspirin. Fast forward through breast cancer treatment, and started HU on March 30. My body went into shock so waiting on another med. I have had the weirdest things happen to me because of my ET. I had an arterial clot in my calf in 2023 after a hysterectomy. I am ‘allergic’ to everything but told that I have no allergies. I break out in hives spontaneously. My knuckles turn bright red randomly. Oh and all of my hair is breaking off. Because I want to look as bad as I feel. I have constant congestion and periodic itching but I will say the easy bleeding was better the 30 days I was on HU. My onc is also a breast cancer specialist and wants me to let him treat my MPN even though I requested a specialist. My counts aren’t even that high, so what the hell.

@janemc Hey there. So I had the ugly red bruises and bleeding prior to dx and that was the reason I initially sought treatment. Dx with Jak2-ET August 2025 and started aspirin. Fast forward through breast cancer treatment, and started HU on March 30. My body went into shock so waiting on another med. I have had the weirdest things happen to me because of my ET. I had an arterial clot in my calf in 2023 after a hysterectomy. I am ‘allergic’ to everything but told that I have no allergies. I break out in hives spontaneously. My knuckles turn bright red randomly. Oh and all of my hair is breaking off. Because I want to look as bad as I feel. I have constant congestion and periodic itching but I will say the easy bleeding was better the 30 days I was on HU. My onc is also a breast cancer specialist and wants me to let him treat my MPN even though I requested a specialist. My counts aren’t even that high, so what the hell.

@mdramsey48 did you have a bone marrow biopsy? My understanding is that your body may make excess cytokines with these diseases so you may experience some symptoms that seem like autoimmune disorders like fatigue and itching. The HU can cause dry skin and brittle hair.

@mdramsey48 I can see an advantage in the oncologist who treated you for breast cancer involved in care for your ET. That doc has a good handle on the lingering effects of any drugs or radiation treatment that you had previously and can help manage them in light of the new diagnosis. Ideally, you'd have a hematology oncologist AND your breast cancer doc working in tandem. But health care in America is not very collaborative. A consult with a hemo oncologist is at least warranted.

@eloise999 I did have a BMB. I just started the HU a month ago but cannot tolerate it. It tried to kill me. I’m waiting to see what is next on the list.

@mdramsey48 I agree with the recommendation to also consult with a hemmatologist, preferably an MPN specialist. At least for second opinions.