New to Hydrea for ET

Is there a reason you are going to a hematologist versus an oncologist or an MPN specialist?

I am starting HU very soon. I have it but am waiting till I see the second Hematologist before I start it. But it is good to read positive reviews.

My hematologist is also an oncologist.

The drug Hydrea/hydroxyurea has been around and used for about 45 years. It is generally well tolerated in patients compared to other chemo drugs and treatments. Many people (myself included, and I am 75 with other health issues) have next to no or no side effects if they learn when to take it. To try and avoid any stomach upsets I take my daily pill after lunch or dinner. No problems after 3 months or so on it.

To make my disease (I am JAK2 mutation ET with platelets as high as 800) easier to work on and less likely to flare, I stick to a Mediterranean Diet. It is widely recommended by cancer doctors and other doctors who deal with people who have a chronic disease that is made worse by inflammation in the body. I cut out sugar and alcohol. No fried foods or "fast food." I eat fish or some chicken versus red meat, low-fat dairy, veggies, and fruits. I keep my weight normal and exercise daily in ways I can easily do it. I get 7-8 hours of sleep each night. I do things that keep my stress level low.

I attribute my lack of side effects and overall health improvement to the above factors and lifestyle changes. For every "scary thing" you read about side effects from hydroxyurea, you can find people of all ages who have been on it for 5-10-20 years without any significant or no side effects. 🙂

Please go into it with a positive attitude. The stress from worry about it can create all kinds of physical symptoms unrelated to the pill you started to take! If you have any side effects, tell your doctor. Rarely does someone have to discontinue it, and many times, any side effects one gets early get better as their body gets used to it.

I have been very happy to read online the positive responses to taking HU instead of the negative and down right scary ones. I was diagnosed with ET with a Jak2 V617F mutation and as I posted in a previous post I am seeing a Hem/Onc at UCLA on the 3rd. I felt I wanted another opinion. I really wanted to know if I’m a bleeder, or a clotter and how do they determine which way it can go. Also, when is a bone marrow test done? The first doctor just said you have Jak2 mutation and this is how we start treatment. If that’s the case then fine that’s what I will do, but more explanation would have been great.

Just saying, "You have a JAK2 V617F is not enough! In my opinion and many oncologists' opinions, diagnosing to be sure you have ET can only be 100% accurate if you have the BMB! It can tell a hematologist/oncologist much more than blood tests alone. I would definitely ask to have one done when you see the UCLA! Bleeding can be caused by several things -- very high platelet count, which crowds out other blood cells, very low platelets, etc. This is why you need a BMB to see exactly what else is going on and get a "baseline" of all your important cell counts.

I am so glad you'll be seeing a specialist at UCLA soon! PLEASE have them order a CT guided BMB for you while you are there!

My hematologist wanted to keep my platelets low because of clotting events in the past. I haven't heard much about anyone having clotting problems here. My hematologist wants platelets low. They were 476 but she wanted to go lower so I am now down to 426. Hydroxurea works well. I feel tired quite often but fight the tireness. Some other blood numbers out of wack but supposedly normal for this situation. I take 10 hydroxurea a week. I am 78 and am coming into a year of this situation that I believe was brought on by stress. I haven't had any problems with my hair. I am fair and outside a lot soaking up sunshine. No problems with sunburn that I believe was an issue with the Hydroxurea. I watch what I eat. I guess you'd say I am doing well, so far. Glad to hear the long termer made it to 19 years with no big problems. My mother had Polycythemia vera but did not die of it.