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

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.

That was a typo. I was diagnosed with ET... I couldn't edit after I had posted.

Thank you. I likely need to go back to the high risk OBGYN & ask why this information regarding decrease in platelets wasn't presented to me. Given my ET they discussed starting me on blood thinners during the course of the pregnancy. Needless to say, it was all highly discouraging & I haven't yet made a decision to try again. I do feel the pressure of needing to decide soon given my age and the fact that the hematologists has explained that my platelet count will only continue to increase with time. I'm at a 615 blood count now and not yet on another type of medication other than the aspirin. The ET diagnosis is still relatively new and very scary for me. Feels overwhelming at times. You've had this diagnosis for nearly 15 years. Do you mind sharing about you quality of life. I'm also curious if your on medication and how long you've been on it if you are. Thats another huge piece that's causing anxiety for me.

Erikaerika,
I just looked at NIH.gov and as of 2020 the median survival age of people with ET age 40 or under was 35 years. So some live longer than that.

Have you had a bone marrow biopsy and do you have a mutation such as JAK2?

You could consider getting a second opinion with an MPN specialist who handles a higher caseload of rare diseases like, ET, PV and Myelofibrosis.

Best wishes to you, Eileen

That is such encouraging news. Thank you! I did have a bone marrow biopsy & I do have the JAK2 mutation. Whats interesting is that its not yet being picked up in my blood alone, which is why they were having a hard time trying to figure out why my blood count had been high for the past 2 years. She said the mutation is only appearing in 2% of my cells; but she did also say that they don't have enough research to know what that means exactly. So course of action is still the same regardless of the percentage of the mutation. It's all still very confusing for me. I'm trying to make sense of all of this. I've tried to do research but it's still just causing anxiety. I don't know what the percentage is that this might then lead to leukemia or if your on the medication for a long period of time it increases the odds of that happening. Can I ask what a MPN specialist is? Would I have to go somewhere specifically to find someone?

That is such encouraging news. Thank you! I did have a bone marrow biopsy & I do have the JAK2 mutation. Whats interesting is that its not yet being picked up in my blood alone, which is why they were having a hard time trying to figure out why my blood count had been high for the past 2 years. She said the mutation is only appearing in 2% of my cells; but she did also say that they don't have enough research to know what that means exactly. So course of action is still the same regardless of the percentage of the mutation. It's all still very confusing for me. I'm trying to make sense of all of this. I've tried to do research but it's still just causing anxiety. I don't know what the percentage is that this might then lead to leukemia or if your on the medication for a long period of time it increases the odds of that happening. Can I ask what a MPN specialist is? Would I have to go somewhere specifically to find someone?

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.

Hi,
We recently found out that my 16 yo daughter has JAK2, very rare and her count is 750. Would you recommend any diet or any life style tips?

Recently diagnosed with ET/mild PV, I too am about to start treatment for the first time. They Mayo 2nd opinion MPN specialist said why not try Interferon, so when my local doc said: HU or interferon, I opted for interferon. I just had my first phlebotomy yesterday, will have another next week to get my 52% Hematocrit level down, then get my first Besremi shot. I was surprised to be offered Besremi rather than Pegasys, as I think my town is rather backwater compared to big cities, but that's what showed up as on offer for me. The clinic financial people will talk with me about expense on Monday. I have traditional Medicare, supplement G and part D for drugs, but it will be thousands of dollars each year if I can stay on it. Her first estimate was $18,880/year, but at that point she did not know about my "gap" plan, so we'll see. They say companies do some $$ sponsoring, for political reasons, I suppose. I was expecting to pay $3300/year or so for Pegasys when I last looked into it. But then no one is asking about the financial pain! (sorry, just on my mind...) I will definitely post after treatment.

Onset of ET was about age 55 based on past CBCs, diagnosed at 60 thru BMB and CALR mutation test, on HU since age 63 when platelets edged up to 800, now 68.

Occasional blinding visual migraines, brain fog, and fatigue at onset. The docs kept wanting it to be menopause and thyroid. An astute nurse caught the history of high platelets and that made the docs pay attention and get me a diagnosis.

Migraines, fatigue, and brain fog improved after I started HU. Platelets swim around in 400s now with an occasional spike into the 500s. My son was born in my 40s, and my energy levels when he was in his later teens was low. He was a great kid, but I really berated myself for not being the mom who volunteered as I did when he was little.

I take covid and flu precautions and haven't been sick in 3 years, but when I did get a cold, it lasted forever. It takes a little longer for dental work to heal. I have more light sensitivity and increased sensitivity to scents and hair products.

I have a good-enough quality of life, but I am not the high energy person I once was. I had to retire at 63 because I was also doing elder care for my mom. This was a very depressing time and took a big chunk out of my retirement benefit.
I might have applied for disability, but was too proud to do it.

Retirement was very difficult psychologically. I am learning to see the glass as half full instead of wanting to smash the glass in frustration because I cannot do what I used to. I feel content most days now. I sometimes feel lonely. I don't look sick, and family and friends are not very alert to my limitations. But I am learning to accept that this is just how it's going to be.

I've learned to pace myself so I don't become a trial to myself and others. But I am not helpless, and I am not in any pain or prostrate with exhaustion as long as I know my limits.

Do take into account that what I am telling you has as much to do with my own psychological quirks and aging as the ET.

Fwiw, a lot of people diagnosed in their 30s or 40s say they have been on HU for decades and have no symptoms. Lots of research is being done on younger ET patients now.

You were probably not told about lower platelets in pregnancy because your OB doesn't know about it. ET hits only one person in 135,000, rarer in younger people. You may be the only patient with ET he's ever had.

Hope this is useful.