New to Hydrea for ET

Welcome to Connect, @kucharski1221. I just wanted to thank you for taking time to post the positive message about your experience with Hydrea for ET. More often, people tend to only write about negative experiences with medications even though millions of patients have successful outcomes. So your reply may be very encouraging to anyone who is new to Hydrea (HU or Hydroxyurea).
What brought you to Connect today? Were you looking for anything in particular?

Looking for community. People going through the same things. I’ve had complications with blood clots in my legs through the years. But overall, I think getting to the mindset that this can be treated and controlled is the goal. I’ll always be here as an ear to listen or to share my experiences with:

I am 73 and have been on Hydroxyurea for 4 years no issues. My platelets were in normal range. It was last fall when I developed hyperthyroidism due to an unknown mold issue in my house that’s now been remedied. My platelets are still a tad above the normal range, Hydroxyurea is a very safe drug to take so don’t worry about it

Welcome to Connect, @hippymo52 Happy to see the HU is working well to keep your platelets in the normal range and no side effects!
It’s interesting to learn that your hyperthyroidism was due to mold toxicity from your house! How was the correlation discovered? Has your thyroid function returned to normal?

Well they are a bit above normal for some reason 🤷‍♀️now . My functional MD suspected it right away took a blood sample, confirmed mold toxicity had my house tested and remediated. She had me on supplements and two pharmaceuticals for less than two months. I now am doing a detox for 6 months perhaps that is causing my platelets to be a bit wonky.

That’s really interesting about the mold toxicity and how quickly your functional medicine MD (FM Practitioner) zeroed in on that as a suspect!
There are several discussions in the forum where members are sharing with their experiences with mold toxicity. I think your input would be valuable! I’m posting the quick search results below so you can take a look at any relevant discussions if you’re interested in popping into a conversation.
https://connect.mayoclinic.org/search/?search=Mold+toxicity
Who does your platelet monitoring for you? Your FMP or your oncologist?

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.

Just a couple of thoughts: 1. Hydroxyurea is a mild chemo drug compared to others. Many people lose no hair while on it. 2. I would hope you would prefer to stay alive even if you lost some hair (there are many reasonable, natural-looking solutions for that), rather than have a debilitating or fatal stroke or heart attack, especially if you are a very active person. 🙂

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

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.