How did you make the final decision to begin HU protocol for ET?

Hello!
So I was recently diagnosed with ET as my platelets rose from 300-to 650 in 2yrs, then up to 950 in 3 months. I'm at the Mayo, and they did many blood tests and determined I had Jak2 and did a bone marrow biopsy. Came back that I was ET and some fibroids but not pre-fibrotic. I'm 67 and my Hemo Dr recommended Pegasys injections weekly as opposed to Hydrea. Said Hydrea would definitely bring down platelet levels minimizing clotting risks, but may not prevent the disease from progressing. So far, 3 weeks in, the side effects are minimal. They will check my blood monthly to see. The Interferon is very expensive even with part D. This is a journey for all of us as not sure they have had allot of study data as this is not a common disease. Best of healing to us all. Blessings, Rick

Glad to hear your maintenance dose is so low! Do you know your driver mutation? I only see my hemo once a year, too. I still get the blood draws every three months, though.

Hi, I apologize however, I don’t know what you mean by driver mutation, can you please elaborate on the definition?. I am JAK II positive and when I was first diagnosed, this test wasn’t even available so the way they would discover if you had ET was ruling out every other blood disorder first, and if you didn’t identify with another blood disorder, and your platelets were still high, then your diagnosis was ET. The bone marrow biopsy showed several other disorders that I could develop which was upsetting at first. The doctor mentioned that although I have these markers, it doesn’t mean that I will develop any of the other disorders. The bloodwork would give him any indication if I were developing another disorder which would require further evaluation and so far everything is good! I live in Orange County, CA and had joined a blood disorder group whose members lived mostly in the Los Angeles area. It was a great comfort to be surrounded by people who had the same or similar disorders to mine. It really helped hearing their stories, and seeing what they had done during the course of their disease and what treatments they were on. I haven’t been for a few years though. I do like the fact that you are still having your blood checked every few months, even though you only see the doctor once a year. I think this is a great idea, and will suggest it to my oncologist when I see him next year. Thank you!

I'm JAK2 positive as well, and have had high platelets since my 30s. I'm now 64. Because my platelets are now near 1 million and my other blood counts are haywire, the oncologist is recommending, rather cavalierly in tone, HU. I have had visual migraines on an off all these decades, but otherwise am basically asymptomatic. I really don't want to start HU because I'm afraid I'll actually feel worse on it, and I'm horrified at the whole concept of chemo drugs and the trouble they may bring down the road. Seems so crude a method. (Is the devil I know better?) I have not had clots and so forth, but I'm still obviously in a high risk category, despite good cholesterol and blood pressure, long time vegetarian, walker, etc. I have a video appointment at the Mayo in a few weeks. After the turn of the year, MAYO said, one would have to go to MN for a second opinion. In short, I'm very conflicted and on hold. I cancelled my December blood test. Need to think and learn more! Currently being treated by an acupuncturist/TCM herbalist, and hoping for clarity as the year turns. Thanks to all for their stories; I'm devouring them!

Seeing the hematologist only once a year seems like a long time, Do you have labs more frequently?

Might help for us to understand that mild oral chemo like HU was a huge breakthrough for people with chronic cancers in the 1970s. Before then, there was plateletpheresis and that was about it.

HU offered disease management without the side effects of huge doses of infused chemo. It's also been around long enough that it comes in cheap generic form and side effects are well documented. Plus a good hemo knows how to find the lowest maintenance dose. No, HU isn't without trade-offs. Not sure any cancer treatment is.

A real draw back of having ET or other MPNs is that nobody's ever heard of them, your chances of getting one is higher than getting struck by lightning, and if you tell people what you have, they say, "Well, you don't look sick." It's hard to find people who get it and can offer helpful advice.

Ranting on: If you have a common acute cancer, people can't do enough for you. There are support groups, prayer chains, and victory laps at the 5K runs when you've won your battle.

Get a chronic cancer and people get empathy burn out. They want to know why you aren't getting better and start telling you to eat more organic beets or something. Like you brought it all on yourself and you're not trying hard enough.

All of that isolation and lack of understanding can start to wear you down after awhile. Clearly, this is not one of my "good days"! But for anyone else feeling this way, I get it! And tomorrow will be better. 🙂

Sorry, "driver mutation" just refers to the mutation you have that causes the ET. You are JAK2+. I have the CALR mutation. The third known driver is the MPL mutation. It seems like treatment is increasingly tied to driver mutation. Glad you had a support group! It really helps to talk to others.

Living with ET for 9 years and have not spoken to anyone else with this disorder. This site is helping me to not feel alone

Interesting your Doc started you on Pegasys injections. Is he an MPN specialist and is this a standard now? Mine started me on Hydrea a little over a month ago and I don't like the idea on doing this the rest of my life. I'm going to an MPN specialist later this month to get a second opinion.

I'm 62 and started on Hydrea a little over a month ago. Platelets went from 520 to 390. I was prone to mouth sores before Hydrea but it just went crazy with mouth sores starting two weeks after starting. I'm not going to lay off Hydrea and do a heavy dose of Antibiotic to get the mouth sores under control before we start the Hydrea again.