Your high platelet counts can cause cancer, as well. The longer you wait to get it under control, the more increased chance you have of the issue affecting your bone marrow and then you are at a whole new level of concern.
Hydrea is the most common and well-tolerated of all drugs. You may or may not have side effects. For instance, people on this thread will say they had no hair loss, but I did. Fortunately, I started with a thick head of hair, so while it has thinned, it is now really manageable, as opposed to before taking HU.
It's different for everyone. Do less reading about what people say and listen to your doctor. You can go down a rabbit hole by "investigating on your web".
This site is solid and reputable and would be a wonderful resource for you.
I started with 730 platelet count and it went down in one month to 420, then 370 the next month, then back up to 430. This is normal. Fluctuations happen but the key is to get it under 450. NOTE: I also had three pints of blood taken out of me that first 6 weeks (one per visit in phlebotomy) and it helped speed things along. This is a normal thing for the doctor to suggest, as well.
I would highly recommend it. Wear sunscreen ALWAYS, as the drug will make you more susceptible to skin cancers. Stay out of the sun whenever possible!
DRINK plenty of WATER throughout the day. Must stay hydrated on this medicine. I take it at night so any short-term effects will be happening while you sleep and I take it this way:
Tap the capsule into the cap of the prescription bottle. DO NOT TOUCH the capsule as it is highly toxic. If it touches your skin, place the capsule aside and scrub your hands good, 3 times, as it is imperative that any residue be removed from your skin. If you mistakenly put it on the counter, scrub that area vigorously, as well.
NEXT, put a mouthful of water into your mouth and keep it there. Tilt your head back and drop the capsule from the bottle cap into your mouth ((do NOT touch the capsule) and swallow the water and capsule at the same time.
Why take it like this? Because this capsule, when it touches the sensitive inside skin of your mouth will cause sores and ulcerations. I've been on HU for 7 months and never had an issue, because I've always taken it this way. The water keeps the capsule from sitting on your tongue or resting in your mouth.
Good luck and feel free to write with any other questions. People on this site are so very helpful.
Ann
Thank you so much for your input and encouragement! I had no idea about how toxic the pill is . My pharmacist did not mention that to me when I picked it up. My genetic testing came back with the CALR positive, the other two were negative.