Essential Thrombocythemia: Making treatment decisions

Yes, I agree, she is excellent and so is the staff that supports her. It’s just regrettable that I cannot have all my medical care at Mayo.

Good to hear, I currently live in CO and have a great provider (B. McMahon) at UCHealth. We are considering a move to AZ, and I have an initial appt with Dr. Palmer on Friday, hopefully we have a good Dr/patient chemistry. Having a top specialist in the area is critical to me as well as climate and other activities.

I was recently diagnosed with triple negative ET, after a bone marrow biopsy. I had been on 81mg aspirin before the ‘definitive’ diagnosis. I was then prescribed 500mg Hydrea. Two weeks later my platelets went up to 1.3mil. They had been steadily climbing over a period of 3-5 years. Now on 1000 mg Hydrea and 6 weeks in my numbers are still over 1mil. My hematologist went on leave so a backup Dr. messaged my question about staying on Hydrea. That message said to also take aspirin and stay on 1000mg Hy. Which (aspirin) I was already taking. With my non-reaction to Hydrea and the triple negative aspect I wonder if I really have ET? And /or if some other med or diagnosis is possible.

I live in N Arizona and I just applied to be a patient at Mayo Clinic in Phoenix. I also have ET. My insurance is Medicare with Blue Cross Blue Shield supplemental. They do take Medicare, but maybe not Medicare Advantage? I was able to get an appointment in a couple of weeks from now.

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.

This forum is a great place to learn from others' experiences. There are several threads discussing HU.

I was scared the first time I heard I needed HU. But now I know others have taken it for decades. This inexpensive drug has been in wide use for more than 50 years, not just for ET but for sickle cell disease too.

Is it perfect? No. It lowers our immune response and makes our skin more vulnerable to sun damage.

And some people have GI or other side effects with HU.

But to me these are all acceptable risks, since HU, by lowering our platelets and making our blood less sludgy, protects us from strokes and cardiac issues.

I have had elevated platelets (500s then 600s then 700s), for a couple of years. My oncologist said I needed to protect my cardiovascular system with not just a low-dose aspirin, but HU as well. He also explained that, unchecked, overproduction of platelets depletes our bone marrow. And he said that bone marrow transplants often don't succeed.

I started taking HU in October. My platelet count has stopped going up, and I'm much less worried about strokes. And my ET fatigue and headaches are easing up.

So I'm grateful my oncologist put me on HU, especially since he started first with 1 500mg capsule a week, then 3 capsules, now 5. That has minimized any side effects for me.

Talk again to your own hematologist to see what's best for you. All good wishes!

I have been on low dose aspirin and hydroxyurea for about 3 months. I have an unrelated surgery complication and am bedridden and so I am not in the sun. At the beginning my stools were very soft and sometimes still are. I felt some fatigue, but minor. My doc has increased my dose along the way, but I have adjusted well. I excercise as best I can with my surgery complication and feel great. I eat a very healthy Mediterranean diet. My platelet count is much lower than yours. I hate taking medications but I know the hydroxyurea is keeping my platelet count at a safer number so I will continue to take it and am grateful to have it. All the best!

The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.

If I were younger and had great insurance, I would certainly try Pegasus!

However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.

I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.

Lack of info is among the worst "side effects" of ET.