Anyone living with Essential Thrombocythemia with JAK2?

@mjfp49
I am very interested in what others say about HU and anemia. I take 500 MG HU daily. I am 50 and have PV. I am anemic. Phlebotomies are great to get my hematocrit down, but terrible on my already low iron. What's a girl to do? One source says to take some iron, while another says do NOT take iron.

@janemc Kindest thanks to you for your reply! I am so grateful for it... this is all so new to me that I am trying to wrap my brain around it all.
Some of the bone marrow biopsy results are in however not all. Have an appointment with the oncologist 9/11 - however will need to be cancelled if all results are not in. Have numerous symptoms.
Sorry to ramble on... however found this site for support.
Again - kindest thanks to you for taking the time to respond! It means everything to me!

@pps26
I was diagnosed with ET in 2023 w/JAK2- numbers are around 600 - I also have the CHEK2 gene mutation - and am adopted so no biological history. ET was confirmed with the bone marrow biopsy. I am 56 and continue to maintain an exercise routine and healthy high protien eating. I do have days that I am pretty tired, and have noticed what I could do before takes a little more out of me - but overall I'm living with the cancer and not letting it interfere with my daily life. I do not plan on taking HU - I will enter the higher risk group once I turn 60, but I take it day by day and try to live healthy. For me this cancer is present but I choose to keep it in the background and while being aware of it, not let it run my life. Good luck with your journey!

@pps26
Welcome! We're not glad you need to be here but since you do, we are glad you are!

I was diagnosed with ET after my platelet count had been steadily rising for a couple of years. When it got above normal my PCP ordered the usual tests to rule out typical causes and then had me tested for the JAK2 gene mutation. (Sometimes that is not done until you see a specialist.) I was having no symptoms, btw. JAK2 mutation (not everyone with ET has that, however) was positive and he sent me to an oncologist who also works in hematology, with a diagnosis of thrombocytosis or high platelet count. I was 77 at the time, iirc.

The oncologist diagnosed me with ET and put me on a coated low-dose 81mg aspirin a day (to make the platelets more slippery) and told me if my platelet count got above 600k I would need to start taking hydroxyurea (HU). We did not discuss any other drugs. (I had already found out on my own that HU is usually the first treatment of choice so I didn't ask about any others.) It finally did and I started treatment earlier this year, one 500mg capsule of Hydrea (HU) a day. I'm also on 2 low-dose aspirin a day now. It effectively brought my platelet count down. It is a mild chem drug but he told me not to let that scare me. There have been people taking this drug for 20 or 30 years. It is also used to treat sickle cell disease.

From my own reading I knew there were two other types of drugs (besides the brand new one already mentioned) that are sometimes used, but HU seems to be the go-to drug of first choice for most people with ET.

He explained that they don't know what causes the gene mutation or the causes of ET, and that it is incurable but it can be managed. Platelets are the blood cells that help our blood clot normally. The immediate risk of ET is from unneeded blood clots caused by a very high platelet count. Those clots can cause strokes, heart attacks, and pulmonary embolisms. Age is also a risk factor as are some other things. Your specialist will need to look at your bone marrow biopsy (I never had one of those), all your bloodwork, and any other factors to determine the best course of treatment for you. We are all a little different so what is good for me or someone else might not be good for everyone.

Prayers that your treatment will go well and you can continue to go about your everyday life. That's what I'm doing. People can live with ET for decades, but it does need to be monitored and treated at some point. Your doctor of course is your best guide.

This website has been of great help, too. Best wishes and please let us know what your doctor says.

@pps26 Hi...and welcome to the club no one wants to belong to. My annual exam in 10/24 showed my platelets slightly elevated. My doc follow my levels for a few months and then did another separate test and discovered I had the JAK2 gene mutation. Right after that (4/25) I met with my H/O who informed me I had ET due to JAK2 so I didn't need a bone biopsy (as my ET was caused by JAK2). Treatment depends on your platelet levels. My initial levels was 426. I get tested every 3 months. My latest levels is 513. It has continued to go up and down a little, which my H/O says is fairly normal. I'm on one 81 mg baby aspirin a day. I have no symptoms and feel perfectly normal. Knock on wood. Just be sure you have quarterly blood for done. Also, this site is a great resource for information. Best of luck to you. xx