Essential Thrombocytosis General Questions

@sdcgcarroll do you mean clinical trials? There are trials, I have looked at them on a website. If I can find the site I will post. You might also follow the Healthunlocked website. Quite a few people on that site use an interferon for treatment. You might want to look into those drugs as alternatives to HU. I am on HU and it worked well to reduce my platelets. It took time, but that helped with some of my worse symptoms. Sadly, treatments may not help with fatigue. It really depends on the individual.

@nohrt4me great summary. I wish my doctor gave me this info when I was diagnosed!!

@sdcgcarroll it is considered and called cancer now. This change was fairly recent so older doctors may still call it a disorder. I wonder why it was not always considered a cancer. It fits the general definition. Was AML ever not considered a blood cancer?

The World Health Organization reclassified MPNs as cancers around 20 years ago. Some doctors haven't got the word, some don't agree with the reclassification, some just don't want the hassle of upsetting patients with the C-word. Since the US is no longer a WHO member, more docs may feel less constrained by its classifications.

When people hear "cancer," they tend to think of the drastic surgical, chemo, and radiation treatments for aggressive acute cancers. But many cancers like ET can be managed with much milder interventions.

Chronic cancer like ET isn't something most people are familiar with. Raise your hand if you've got the "humph, you don't LOOK sick" hairy eyeball from people if they hear you've got cancer.

However, I read a story in the Washington Post a couple of years ago that many cancers are now manageable if not curable. So the idea of a chronic cancer may become more common and, I hope, lead to less fear and better understanding of diseases like ET.
https://www.washingtonpost.com/health/2023/06/17/cancer-treatment-advances-chronic-disease/

Here is a great site you may find helpful.
https://www.youandmpn.com/en-mpn/home

@janemc Thank you. I'm glad that those experiences are all behind me, and I hope they stay behind!

Not as many of us MPL's around. But I have to say that with Hydroxyurea, I believe I am under control. My platelets tend to stay in the 500's but my hematologist doesn't seem to mind, and since I feel ok (mostly) I don't worry about it.

@kapow

May I ask, how long did it take for HU to get your count down?

Our version apparently is the hardest to manage.

@janemc I was first diagnosed with high platelets (~900) when I had the stroke in Apr 2023 and by September my platelets were down around 450. I have never actually made it into the "normal" range. The closest I have ever been is 404. I started out for the first 6 months have blood tests every week (which was very difficult since they can never find a vein!), and for the last year and a half I go for tests every 4 weeks (still can't find a vein! LOL) . So I feel I am being well monitored.

I didn't know we were the hardest to manage. How are you doing?

@kapow

I'm really glad they're keeping a close eye on you . . . very sorry the blood draws are so difficult, though.

HU has helped me tremendously, but I have to take 6500 mg a week to keep my count 400/450ish. Thank goodness I tolerate it well.

As we were working towards an effective dose, my oncologist said the MPL variant is more challenging to get under control.

Our risk of blood clots is high too. Was your stroke caused by a clot? What a terrible way to find out you have ET.

@janemc I take 1000 mg 5 days a week and 500mg on sat &sun. So I guess that is 6000mg a week …almost the same as you. And yes I had a “humongous “ blood clot in my carotid artery. (That was my vascular surgeon’s description. ) Things might have been much different if it had all broken free. But I had surgery to remove the clot and other than an extra “wrinkle” in my neck from the incision I am none the worse for wear.