Living with ET

Hello Everyone seeking answers to ET questions,

Check out this link.
I have had ET for 23 years. This is the newest protocol from July 2025.
It takes several readings to get an understanding but worth the effort.
https://www.nccn.org/professionals/physician_gls/pdf/mpn.pdf

Hi @lynnevb, looks like we need to be a Registered use, providing a user name/password to view the site. Would be interesting to see what the new protocol for ET are though. ☺️

@loribmt It is free to register and get a user name.

Thanks. Yes, registration is free.

The thing I noticed on the protocols was that patients should manage cardiovascular risks. That isn't something my oncologists have touched on, but my primary doc *did* discuss. It has always made sense to me that if your risk for clots and strokes is higher due to ET, you watch your diet, get exercise to help circulation, and monitor blood pressure and cholesterol.

Looks like the docs now classify patients as very low, low, intermediate, and high risk. Used to be just three categories in the old risk scale. The very low risk category is new (to me), for those under 60 with no symptoms or history of clots, no JAK2.

Also looks like docs are less quick to start cytoreduction meds like HU until you hit the intermediate category, and even then there seems to be considerable wiggle room.

I wish they would add to the protocols: Advise and examine patients re skin cancers if on HU.

your platelet count isn't that high, and you are young, unless you have other risk factors I would ask Dr why you need to start HU at this time. And I can understand why the "c" word can strike terror in your heart, I remember at first I was like paralyzed until a friend gave me a kick in the butt. But my count was over 1100 and also I'm OLD.....I've been on HU almost 5 years now.

@nohrt4me Thank you for your thoughtful comments and attention to detail when reading the protocol. My Hem Oncologist reminds me every visit to see the dermatologist yearly for head to toe skin check and to take other skin precautions such as staying out of sun from 11-2. (He told me and I have read elsewhere that folks with ET have a 9% increased risk for skin cancers) I see the Hem Onc every 3-4 months. I see my roll here is helping people to learn more about their condition, advocating for care when there are gaps in safe practices, encouraging folks to make healthy choices and of course looking for help and support for myself. We help each other and we ask for help and we give help. Support is full circle giving and receiving. I have had this since 2003 and protocols have changed as scientists have learned more and there are more medications and support therapies to help us now.

To Tinak123, I was diagnosed at 49 as well. I am 71yo now. I have lived a pretty normal life with a few modifications. I hope you take the time to read the protocols I posted a couple of days ago. It is free to register and get them. Also do not be afraid to get a second opinion. I have done this 3 times in the 23 years I have had ET. 2 times at Mayo in Rochester, MN and once in Mayo in Arizona. My local oncologists was aware and supportive of these decisions. I am very glad I got the second opinions and I know they prevented complications and increased understanding of this disease to myself and my local oncologist. You see we have a rare cancer and not all oncologists are up on ET and may only have seen a handful of patients. Hope you are brave enough to read, ask and advocate for yourself. You can do it!

I am 71, diagnosed in April with ET, and no symptoms, just elevated platelets levels. I also was scared of the "c" word but started taking Hydroxyurea about 4 weeks ago. I return next week for follow up blood work to see any change in my platelet count.....last test showed an increase to 548.
I will report my results. Pray about your choice....and may God guide and bless you!!

Hola, empecé a tomar hidroxiurea con 31 años, tengo 42 y por el momento tengo una vida bastante normal. Trato de caminar o ejercitarme al menos 4 veces en la semana y eso ayuda a mejorar mi nivel de energía. Se me a caído el pelo y ahora tengo menos volumen (pero tengo pelo).
Saludos

This diagnosis and the "c" word can be quite a bit to digest! I was diagnosed in April for ET at age 77 with a platelet count of 581k ane a JAK2-positive test. No bone marrow biopsy was done. My PCP referred me to a hematologist/oncologist. I'll share what the specialist told me.

He said they don't know what causes ET nor how to prevent it. He said I was not born with this and it is not hereditary (which was a relief, as I have three adult children). They don't know what caused the JAK gene mutation nor how to prevent it. He said he prefers to call ET a blood disorder rather than a cancer. He said if my platelet count gets above 600k he will prescribe a chemo pill for me, presumably HU. He said my age (well over 65) puts me at extra risk for blood clots that can cause strokes and heart attacks. My family history has a lot of heart attacks, too, although I've not had a blood clot. He put me on a coated low-dose 81mg aspirin a day at my first visit and I continue to take that. He said this makes the platelets more slippery and less likely to form clots. The main danger from ET is blood clots that could be disabling or fatal (stroke, heart attack, blood clot to lungs).

More personal details; can skip if desired:
As my platelets have been steadily increasing for several years, I thought yesterday's appointment would show a count of over 600k and he'd want to start the chemo pill, but thank the good Lord my count had dropped to 540-something-k! I don't know why else, because it's never dropped any before. I've got to have cataract surgery in Nov. and Dec., and I'm one who doesn't like to do more than one thing to my body at a time, so I was VERY relieved about the blood test numbers. (I really don't like doing anything to my body or taking any meds, but often that's not possible.) Hopefully, I will be okay at least until January when I go for my next checkup. I'll face whatever comes at that time with the Lord's help. For now I'm just relieved and thankful to not have to go on the chemo pill.

I say all this to encourage you to try to remain positive. The specialist also told me at my first visit to not be dismayed at hearing "chemo pill," because most people tolerate it well, without throwing up or losing their hair. He was very positive and encouraging to me about this disease. I think it's technically a cancer because the blood cells grow and divide too much, but it's thankfully not a cancer that spreads to other parts of our body. We're calling it a "blood disorder." He said it rarely can turn into leukemia, but that usually does not happen, and if it ever does, they'll treat that then.

I am NO doctor, but my only possible question about your doctor is that he seems to be pushing HU with your platelet count at what it is and your age so young. You might want to discuss the reasons with him or even seek a second opinion. Maybe there are other factors; idk. My hem/oncologist implied that I would need a chemo pill at a count over 600k because my age puts me at extra risk for blood clots. Again, right now he only has me on a low-dose aspirin every day, and that was at a count of 581k platelets and me being at higher risk for clots. I certainly don't want to go on a chemo pill before I have to, and I don't blame you for not wanting to, either.

From what I've read about ET, most people have an average life span. I'm not thrilled with my diagnosis, but I know it could be much worse, and I'm thankful there are effective, relatively safe treatments. My faith in God is a great comfort to me as well. I'm a widow who lives alone, so I'm also thankful you have a good husband to be with you. You are in my prayers for strength, healing, comfort, and increased faith. Hang in there! I've read quite a few posts by people who have had ET for decades and are still doing well. Of course my age makes it easier for me to accept, but I am hopeful you will have a normal lifespan and ET will not cause you undue problems.

Forums such as this one have also been helpful to me. There are several ET discussions here so check some of the others out, too.

Sorry so wordy; I'm on a laptop and I'm a fast typist, LOL.

God bless you and please keep us posted.