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

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. 🙂

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So sorry you’re having a tough time and I think we’ve all had our ups and downs which is perfectly normal. As time goes on, you just realize that this is a part of who you are, and that’s OK. I really loved and admired my dad very much and when he was having intense back pain and I could see it by the expression on his face, instead of dwelling on the
pain, my dad would say “today is a good day, and tomorrow will be even better!” I loved his positive attitude and believe he was absolutely right! I wish the same for you.

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Today diagnosed with ET/JAK 2 mutation.
Hello ~ I have been reading other posts and recognize that initiating this one may move me to a more appropriate/helpful thread - which I would be very grateful for! Today was my second consult with a specialist in hem/onc to discuss bloodwork results. Dx = ET/JAK2 V617F (MPNs). Tx = ASA 81mg 1xday. A bone marrow biopsy is her next diagnostic plan for identification of secondary process. She is advocating for hydroxyurea starting with a low dose. So first, I am overwhelmed by this diagnosis. I would not have even sought medical help but this (platelet count 621)was discovered in a pre-op screening (as an aside, I was cleared for UKA which I had 11/15 - all went very well and rehab is also going extremely well). Aside from "verbally vomiting" here my initial response is....I am very thankful that I found this group/resource as I take my first step on this journey. Next, I imagine I will want second opinion(s). Did others do so as well and did you do this prior to having a biopsy? Prior to starting medication? Aside from a minimum dose estradial patch/progesterone I am not on any meds so this is all quite dauting.
Sent with great gratitude ~

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@jsslmt53, welcome. We have many members who are living with Essential Thrombocythemia and talk about JAK2 mutation and treatment options. I could've moved your initial post to any number of discussions where you'll find helpful and supportive members to journey with you. I chose to start you here:
- How did you make the final decision to begin HU protocol for ET? https://connect.mayoclinic.org/discussion/how-did-you-make-the-final-decision-to-begin-hu-protocol-for-et/

Here you'll meet @eansgardengirl @arti4 @treeore @rjgregory440 @koryw208 @athl @nohrt4me @eileen11108 @claire39 @anno @garyinmo @cleo2 @mortysdad @biddypoppop @cowestwinds @marthajones and others.

Here are additional discussions you may want to check out:
– Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
– People living with ET and taking Hydrea: Anybody setting records? https://connect.mayoclinic.org/discussion/anybody-setting-records/
– I have JAK2 ET and MPN: Anyone else have these symptoms?https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/

@jsslmt53, you're asking all the right questions. I look forward to seeing the guidance you'll get from others.

PS: Verbal vomitting allowed. 🙂

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Today diagnosed with ET/JAK 2 mutation.
Hello ~ I have been reading other posts and recognize that initiating this one may move me to a more appropriate/helpful thread - which I would be very grateful for! Today was my second consult with a specialist in hem/onc to discuss bloodwork results. Dx = ET/JAK2 V617F (MPNs). Tx = ASA 81mg 1xday. A bone marrow biopsy is her next diagnostic plan for identification of secondary process. She is advocating for hydroxyurea starting with a low dose. So first, I am overwhelmed by this diagnosis. I would not have even sought medical help but this (platelet count 621)was discovered in a pre-op screening (as an aside, I was cleared for UKA which I had 11/15 - all went very well and rehab is also going extremely well). Aside from "verbally vomiting" here my initial response is....I am very thankful that I found this group/resource as I take my first step on this journey. Next, I imagine I will want second opinion(s). Did others do so as well and did you do this prior to having a biopsy? Prior to starting medication? Aside from a minimum dose estradial patch/progesterone I am not on any meds so this is all quite dauting.
Sent with great gratitude ~

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Probably doesn't matter how I made my decision. Everyone has different ideas, fears, and circumstances.

If you are afraid of HU, it is helpful to tell your hemo EXACTLY why you don't want to take it. If you give some vague answer like, "I just don't like taking pills," or "I want to treat myself as naturally as possible," you will get set down as uncooperative and that won't help your doc-patient relationship. Not fair, but that's health care in America. My husband, who had a heart attack, has been balky with his cardiologists about taking pills, and they now think he's a nutbar.

Side effects of HU include gastric upsets, increased risk for skin cancers, leg ulcers (if you're on it for more than 20 years), mouth sores, hair thinning, skin and nail changes.

The fact is that your ET is not going to get better with diet and exercise (though doctors need to wake up and realize that these things really help!) and that platelet count really doesn't affect your clot risks. Patients can get massive clotting events even if their counts are in the 500s. Once platelets approach 1,000, you run the risk of Acquired Von Willebrands. Your clot risk is more dependent on type of mutation (JAK2 patients have the highest risk), age (if you're over 60), and whether you've had a previous clotting event. (You can look up something called the IPSET score, which is what docs use when they make the determination to recommend HU treatment. https://thehematologist.org/ipset-thrombosis/ )

Second opinions are always good!

So is asking your doctor if you are a good candidate for Pegasys (interferon), an alternate to HU that actually may retard progress of the ET, but is frightfully expensive, which might be why docs don't recommend it more.

It might be a better strategy to take a low-dose of HU now than to let them go sky high and have to take mega doses to reduce your platelets. My dad also had ET, didn't know it, and was hit with big doses of HU when his platelets went way over 1,000. He had bleeding episodes with that, and it was not fun.

I've been on HU for four years, 500 mg every day maintenance dose. I am doing OK.

I know this is all scary at first. After a few years, it gradually becomes more annoying than anything else. Most people live a normal lifespan and die of something else if they are treated properly.

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