I have E.T. with positive JAK2 gene mutation.

I am 79 today, and have been diagnosed with ET JAK2 and on HU since 2022.

It is impossible to tell if my feeling tired or not sleeping, or forgetting stuff is attributable to the ET, HU or aging---right??

So I just try to feel grateful that I can still walk my greyhound daily, do a little gardening, and have friends. Gratitude helps when possible.

I am 79 today, and have been diagnosed with ET JAK2 and on HU since 2022.

It is impossible to tell if my feeling tired or not sleeping, or forgetting stuff is attributable to the ET, HU or aging---right??

So I just try to feel grateful that I can still walk my greyhound daily, do a little gardening, and have friends. Gratitude helps when possible.

@kapow It was in my “calf” no pun intended🤣 they started me on a heparin drip and it made its way down to my big toe after 5 days and went away. No one ever figured out what caused it even though my platelets were high then. And they checked EVERYTHING…except for an MPN. You were kidding about the laugh thing right???👀

@mdramsey48 Interesting that it was just dissolved with the heparin . I was on heparin for about 4 days prior to my surgery and the worst was that they had to check my blood every 3 or 4 hours (can't remember why) and since I have such small deep veins it usually takes more than one poke. I was used to that, but one night at around 3 in the morning I was awakened to have a blood draw, and the nurse took 10 ...yes TEN...tries before she got any. I offered to slit my wrists so she could get some blood! HaHa

And yes, I don't really MOO .(LOL)

@kapow I was immediately started on heparin and they took blood every 4 hours for 5 days. I did have good veins but they wiped them out. It was a nightmare plus they had to only use the arm that didn’t have the two IVs.
One guy was shaking so bad he blew a vein out on my hand and let me tell you that was painful! I am very sorry to hear you don’t really moo when you laugh lol. Are you ok now? Your event sounds horrific.

@mdramsey48 Sounds like you had quite the experience too!

And yes, I am OK now. It was as a result of the small stroke from the carotid blood clot that someone actually looked at my bloodwork to see that the platelets had been on the rise for about a year and a half. So I guess it was worth it to get properly diagnosed. I continue to have bloodwork monthly (took 5 pokes this week) and my platelets on this test were at 600. They have been on the rise again for the last couple of tests. So far the hematologist has not been too concerned, but I think if next month they go up again, I may ask about changing my dosage of Hydroxyurea. (I take 1000 mg M-F and 500 on Sat & Sun) She may do that anyway. I have total faith in her opinion.

I was just diagnosed yesterday also with JAK2.

This has been a crazy journey. Went to hospital 18 months ago with chest pain. When CBCs came back I noticed my platelets have been high for at least the last 9 years (this was the first time I saw a trending report. Didn’t think much of it until a couple of months later when I found out high platelets were not a good thing.

Talked to my GP who didn’t think it was an issue (platelets were in mid 400s at the time. But trending up). He said of it made me feel better go find a hematologist. I was lucky, my new cardiologist referred me to a hematologist right away.

So hematologist says to cardo basically or order a cbc and she will review it because they are too busy to take benign cases.

We’ll report comes back and it says at the end that the results warrant her seeing me.

At this point no symptoms, just wanting to rule anything out. She does a JAK2 test and it comes back positive with .7% burden. She says she has never seen one that low lol.

She asks if I am open to a bone marrow biopsy. Since I already reached my insurance deductible I say sure. She says great we can rule anything out and it was nice meeting you.

Comes back with JAK2 at 2%. MF-1 fibrosis, hypercellularity, basically everything except abnormal morphology. I am 64 so she puts me on aspirin and we do bloodwork every three months. Platelets and other counts are now slowly trending up. I see her in February and she asks if I am open to another biopsy. She says she doesn’t expect any changes in less than a year so if that’s the case I will stay on aspirin and see her next year.

Well got the results and morphology is now abnormal too. And platelets up to 567 with whites and reds at high end of normal. Last piece of the puzzle and diagnosis was yesterday. She is still shocked that it’s come to this so fast with the low JAK2 burden.

Started hydroxyurea today 500 mg. I am here to read all about this.

Sorry for the long story but it’s amazing to me how this all played out - just because I noticed after a hospital visit my platelets were a little high for so long.

@azsomeone
Was your recent diagnosis after your 2nd BMB for PV or MF?