return visit to doctor this week

[Highplatelets]

I was diagnosed with jak2 positive ET 3 months ago. Platelet count was 620 and was randomly found during routine blood work. I had been having headaches, but honestly I have been taking a baby aspir

[Solyesh]

Welcome - sorry you have to join us but glad you found this wonderful community on line. It is a great resource for information and support. Right off the bat, my number one suggestions would be to make sure you have an MPN specialist on your care team. No matter how great a general doctor or even hematologist might be, our diseases are too rare and heterogenous to not be handled by a specialist (or at least have their input) - these are very rare diseases meaning that 99% of doctors probably have no or very limited experience treating us. The great news is that increased interest and new medicines/trials bode well.

Here is a link to MPN experts/docs - mpnforum.com/list-hem./

Best

[Pachena]

Welcome here. This is such a welcoming and supportive forum.

I was diagnosed with JAK2 ET earlier this year which was confirmed by a BMB a month ago. In Jan I was started on a daily aspirin and a couple of days ago a low dose of Hydrea for the first month to see how I go. One pill every second day. I was hesitant taking a chemo pill, so my Heamatologist suggested starting slowly on Hydrea and she will check my bloods and see me again in a month.

I also have been having headaches for the past 6 months which is something I rarely get. They have slowed off a bit over the past month or so. I’m not sure why….

I’m 60, Im not sure what age you are as they don’t usually put you on Hydrea here until after 60 unless you have had a history of any TIA’s. I had two TIA’s a couple of years ago.

[WRLM in reply to Pachena]

I’ve had years of terrible headaches I couldn’t explain until finally being diagnosed in March. Nothing would help - Tylenol, Advil, Alleve wouldn’t even take the edge off them.

After being on the baby aspirin for about a week the headaches became intermittent, and by the 2nd week they week pretty much gone!

I’ve only had maybe 3 headaches in the past month - I took an extra aspirin and it would clear it right up! It’s been SUCH a relief to not deal with the daily headaches.

I guess the aspirin gets the blood flowing enough it actually gets proper oxygen flow to my head? It’s crazy how long I dealt with such terrible headaches when there was such an easy fix!

I hope yours manage to stay away too!

[Highplatelets in reply to WRLM]

great to hear others going thru the same thing and that I am not crazy. Haha . Are you just on aspirin now? My doctor wants me to go on hydrea but I am trying to avoid.

[WRLM in reply to Highplatelets]

I’m just on aspirin for now. My first appt with an MPN specialist is in October, so not sure if things will change after that.

But you’re definitely not crazy!

[saltmarsh]

Good advice already given here. I am 76 and was diagnosed 3 years ago - pv, Jak2 positive based on bmb. Been on hydrea for last 2 years and numbers are very much under control. However, we all respond a bit differently so pay attention to your physical well being and any changes. I too hesitated to start the hydrea but just be sure to drink lots of water and limit alcohol. This forum is a great resource. You will do fine. Stay in touch as you proceed down this road. Best wishes

[Pachena in reply to saltmarsh]

Can I ask, is limiting the alcohol to do with how it dehydrates? I read about drinking at least 2litres of water a day to keep hydrated and keep the body regular.. Is there more to it than that, do you know?

[saltmarsh in reply to Pachena]

I can only speak for myself. Although I thought I was drinking enough water, I was wrong. Since upping the hydration, I've seen a reduction in the slight dizziness I used to deal with.

Regarding alcohol, unfortunately for me, less is more. I used to enjoy a glass of whiskey and that has been eliminated due both to its diuretic and inflammatory properties. I do still enjoy a beer but that's about it. Good luck and stay positive.

[hunter5582]

Hello and welcome to the forum. Glad you found your way here. Like many of us, the thrombocytosis was found with routine CBC. While many of us thought that we were asymptomatic, note that headaches are one of a number of common MPN symptoms that we realize in hindsight are related. It can be complicated since many MPN symptoms can occur for other reasons too.

The first step will to get a proper diagnosis. You will need know whether you are experiencing a primary or secondary thrombocytosis. Your hematologist will need to do some additional testing, such as ruling out causes for secondary thrombocytosis, checking for the three driver mutations, other relevant blood work and possibly a bone marrow biopsy.

The most important thing at this point is to consult with a MPN Specialist if you do indeed have a MPN. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. Optimal MPN care requires that you educate yourself about MPNs and consult with a MPN-expert doctor. Here are two lists.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

I was diagnosed with ET over 30 years ago after it was detected on a routine CBC. It progressed to PV about 9 years ago. I have lived a great life and at age 67 continue to do so. It is important to know that is you are diagnosed with ET, that is not the end of the story. It is the beginning of a new journey. It is a journey that can be successfully navigated. Most people with ET can anticipate living a normal lifespan with proper care.

Wishing you all the best. Please do let us know how you get on.