Is Essential Thrombocythemia a blood disease or cancer?

I took a week off work when I started HU. I thought I might feel sick. I went back after two days. No nausea, no ill effects. After a couple of weeks I actually felt better because the fatigue was gone. Not something you expect from chemo, but my hemo confirmed that many people do feel better.

The effect, as you can see from many here, is individual. A few people have trouble. Many find it does not worsen symptoms. A few of us weirdos actually feel zippier!

I think the standard spiel is that doctors get nervous about prescribing it for more than 20 years. I started it at 63, so really wasn't worried about that 20-year rule. And there are people here who have been on HU for more than 20 years.

Bottom line, you won't know how it affects you until you take it.

Also, I have never had a clot or hemmorhage. My dad had ET also, went undiagnosed until his 70s, when he had leg clots and bad circulation. Not fun dealing with that. His experience made me open to taking meds when I was diagnosed.

@nohrt4me
Wow! Thank you so much! I will take the pill. I wish I could give you a hug! You took the time to reach out to me. I’m grateful ❤️

@dragonflylynda Hoping it will be smooth sailing for you, my friend.

I was diagnosed with ET with JAK2 mutation a little over a year ago and even my hematologist doesn't call it cancer, just a blood disorder. As a result, I don't think I have taken it as seriously as I should. I have been taking HU for almost a year without any side effects, so I feel pretty fortunate. I'm really glad to see all the discussion here about ET. The input from other patients is so valuable. I was really scared to start taking the HU and found a lot of information and encouraging words on this forum. My thanks to everyone who participates.

@panamsandy I have +jax2 and really scared to take the pill HU , why do you have to be careful handling the pills? Sounds very toxic!

I took a week off work when I started HU. I thought I might feel sick. I went back after two days. No nausea, no ill effects. After a couple of weeks I actually felt better because the fatigue was gone. Not something you expect from chemo, but my hemo confirmed that many people do feel better.

The effect, as you can see from many here, is individual. A few people have trouble. Many find it does not worsen symptoms. A few of us weirdos actually feel zippier!

I think the standard spiel is that doctors get nervous about prescribing it for more than 20 years. I started it at 63, so really wasn't worried about that 20-year rule. And there are people here who have been on HU for more than 20 years.

Bottom line, you won't know how it affects you until you take it.

Also, I have never had a clot or hemmorhage. My dad had ET also, went undiagnosed until his 70s, when he had leg clots and bad circulation. Not fun dealing with that. His experience made me open to taking meds when I was diagnosed.

@nohrt4me
Hi! I hope you had a great Christmas. I was wondering if you take supplements for this disorder? Do you wear masks?

@dragonflylynda I keep masks in my purse in case I encounter a crowd. I avoid theaters and restaurants at peak times. I have trouble with fatigue, so avoidance is not really putting a crimp in my social life.

I take a daily vitamin formulated for senior women. I get flu and covid shots. I have had the shingles shot.

I am 71 and was diagnosed 11 years ago and have seen supplement claims come and go--turmeric, CBD oil, etc.

I did try CBD oil for sleep with my doc's input after people were talking it up. Doc said that she doubted anything 5% or less THC content would help. I found a reputable processing company with her help that required quality control testing. All I got after a month was heartburn. I was out $40. None of that brought restful sleep.

I started exercise/rosary routine which helped more. (I am a lapsed Catholic, fwiw. I don't push religion, but the repetive prayers have a calming and focusing effect.)

When I reported my findings abt CBD to another support group, holistic practitioners chimed in and said I didn't get the right product, didn't take it properly, was probably on the wrong diet, hadn't taken it long enough, etc etc. Their fallback always seems to be to blame the patient when treatment doesn't work. They were all willing to get me straightened out. For a fee. That insurance does not cover.

So long story short: My faith in the alternative medicine racket is even less than my faith in Big Pharma. At least the FDA collects data on approved drugs, and you can file adverse reaction reports if you have problems.

If you are nervous about hydroxyurea, you could ask your doc about anagrelide or besremi. Neither of those are "chemo" drugs, and they do have a proven track record lowering platelets.

These are only my experiences and opinions, of course. I know it's all confusing at first. ET is not my major complaint in the host of ailments I have. It just complicates all of them.

Best to you!