Essential Thrombocythemia: Making treatment decisions

Leaving it in the Lord's hands is the best thing any of us can do. I tried hydroxy and for 3 months all went really well (platelet count was going down) then the side effects hit and I had to stop. My platelet count is now over 1 mil and I hope to be starting Jakafi. I will be praying for wisdom for you and your doctor. Please keep us posted.

I'm surprised he gave you an option with them being that high!!!

Leaving it in the Lord's hands is the best thing any of us can do. I tried hydroxy and for 3 months all went really well (platelet count was going down) then the side effects hit and I had to stop. My platelet count is now over 1 mil and I hope to be starting Jakafi. I will be praying for wisdom for you and your doctor. Please keep us posted.

I have been taking it for three years it brought my platelet. count within three months. my count is now only 391000. Other than fatigue I have not side effects.
Hope this helps
Good luck.

I can't imagine with a platelet count that high how you are considered low risk. I had serious pulmonary embolisms when my platelets were 800,000. I survived fortunately but with lung damage. Take the HU and don't dwell on side effects. If you do you will have them, real or not. I haven't had side effects at all and my platelets remain stable in the mid 200,000s while on daily 500 mg of HU.

I just was diagnosed in early January so have been on Hydroxyurea for ~24 days now. I'm 46 with platelets around ~600 but i had a heart attack 2 years ago so they have me as high-risk. my experience was headaches for the first ~2-3 days with a little bit of nausea (not bad). The headaches went away with some tylenol and then went away (mostly) after the first 3 days.

After that I've settled in a bit but certainly notice muscle fatigue and joint pain more than before. I'm a pretty active person so not sure that is intensifies it. For example pre-Hydrea I lifted weights 3-4 days a week and ran ~30-40 miles a week. I ran 9 miles the other day and have continued my lifting but the best way to describe it is I currently feel 70-80% as strong as a month ago and I feel I need to get more restorative time in the afternoons and then am more "sore" in the morning. I'm told by others on this thread and by doctors that goes away with time on the drug but i haven't reached that point.

Lastly...it's definitely had an impact on my skin. So far it's been bringing out old sunspots on my face (which I've heard is common). Also I am feeling areas of my skin as more sensitive to the sun then before even in ~30-60 seconds in the sun. Not that they are getting burned that quickly but you can just feel the light more intensively. As a result I'm putting essentially full sunblock on my whole body now which is fine and I can live with it but also just something new. To combat this my wife researched that Coconut oil and honey based products are good (someone please tell me if they are not 😉 because I've been now using just a couple different types of creams at night and i'm already noticing the changing skin is stopping or getting back to the way it was.

Beyond that I think the last worth mentioning (at least for me) is the mental side of it. I've personally struggled a bit with the idea that I'll be on a chemo pill the rest of my life and that I may be 70-80% for that time. That may only be me, and likely because this is a new diagnosis for me, but it's probably been the hardest thing for me whether that is a side effect or not. Also something I'll likely get past but honestly it's better than another heart attack or ignoring the problem.

So yeah overall good luck with your decisions. I think you'll find a ton of people on this that forum that have been on Hydroxyurea for a long time. Even 30+ years and are going strong! so on the whole there are some side effects but to they really aren't that bad so far. There is also a good chat within this forum that discusses other alternatives to Hyrdoxyurea which I've personally found interesting.