MATEs FORUM

Hello, I am mitch, 65 years old. I was diagnosed with ET JAK 2 after a check up. I have recently noticed that my health is not good and I feel tired all the time. My platelet levels have been high for a few years and my doctor has been monitoring me regularly and when they were over 600 I had to take Hydrea.

I am going on a trip for a month and have been given blood thinners and given specific instructions by my doctor. However I am still worried and would like to ask if anyone here has gone through the same thing and can give me some advice? Thanks.

Good day Mitch & Welcome to MATES MPN Forum,

Glad you've managed to find us okay, and you've navigated how to make your first Post on MATES. Mitch, I am not sure if it's the first Two Or Three Posts that require Admin approval before they 'Go Live' etc.

My name is Steve (based in Sydney - where are you Mitch?). I am the Admin at MATES, and I will do ALL I can to answer whatever questions I am able to while also providing some experiential advice of my own relevant areas of my MPN journey thus far...

Mitch, you and I are of similar age, (I'm 65yo), and we have also commenced our MPN journey by having started with ET... (Primarily a Platelet problem)

First diagnosed (Dx) in 2016 w/ ET, a subsequent Bone Marrow Biopsy (BMB), eventually reclassified me as POST ET / MF. Mf being Myelofibrosis of course...

Hence, perhaps in some small ways I can lend you information that I myself have found helpful in my own management and indeed experiences of living with my MPN. Please always feel free to ask anything at all... Medical specific questions, I will always default to suggest that such questions mainly be posed directly to your medical team, in the first instance...

Of course, I am not medically trained, neither are most of the people that frequent MATES, they are Patients who can speak to their own experiences, problems & resolutions with MPNs etc.

Okay, now to try to help you with your Q & A...

Firstly, how long will you be travelling in the air? If it's Europe etc... Remember to always be up and about as often as it is safe to be so etc. One of the biggest problems with ET is the potential for having what are known as 'Transient Ischemic Attacks' (TIAs), which are of course minor brain strokes. Having had three (3) those myself, they can be quite a concern for one's general health... Warwick, another of our members travels frequently and likes to utilise compression stockings to help overcome Deep Vein Thrombosis (DVT). Adding magnesium to my dietary supplements also helped me deal with cramping...

Fortunately, there are some simple fixes too... Well easy to say than to do I should correctly follow up with...
One's general health is often dictated to by one's current 'Life-style' environs...

In my own case, I soon learned how to alter my diet and exercise regime. I realise that suffering from extreme fatigue and exercise do not immediately appear as compatible bedfellows. However, in my own case I have learned that the opposite can also be factually true.

I now try to adhere to my stricter 'Anti-Inflammatory' diet, and I started cycling a few years earlier... Shortly, I will notch up 60,000Ks of distance since I embarked upon my new cycling exercise regime... Feels awesome too...

That doesn't mean I have eradicated all of my symptoms, because that is simply not true. However, I can better manage and tolerate them today than ever before... Managing a 'Chronic' condition, is in my view, about learning how to live a normal life... MPNs are CHRONIC in nature, first and foremost... Hence, we will also need to have extremely amicable relations with our well chosen medical teams, because we will likely be working with them for quite some time...

Yes, it is also true that some of us may progress faster than others with our MPNs, but in my experience that is in the realms of 10-20% of MPN patients. The rest o f us must learn how to successful navigate our illness and 'Live the Best Lives' that we are able... in my view...

Not knowing much about your MPN journey thus far Mitch, it's always hard to know specifically where you are in your MPN cycle at this time(?)

However, many of here commenced our MPN journeys on HU, and eventually found better methods of treatment, that are also more promising and less deleterious to our health and well-being, in my view...

Hopefully others might join in and welcome you to MATES shortly too... But pls be a tad patient with them because everyone's out there doing their own thing too of course...

Once again Mitch, welcome to MATES and hopefully we might get to meet you at one of our upcoming SIX (6) weekly MATES CAFE CATCHUP virtual meetings.

All are always welcome to these largely informal gatherings to talk about all things MPN...

MATES Forum always has a POST up with the details of the next meeting & information on how to join in etc.

The Platform is hosted by Microsoft TEAMs and generally speaking, it's best to first download the APP to your preferred device, then just 'Click-On' the Link on the MATES POST for the meeting when due to occur etc.

Mitch, should you ever wish to email me directly, steven(at)mpn-mate(dot) com

And if you ever wish to speak by phone with any of our members, they all are usually happy to pass on their cell numbers too...

Best wishes Mitch and hope to speak with you again soon...

Steve
MPN-MATE Admin

Welcome, Mitch

I’m fairly new here myself too.

Steve and the group are amazing

I am the same as you ET Jak 2+ diagnosed early 2020.

I was on Hydrea for 6 months and didn’t like the side effects so went off it. We were travelling overseas and my haematologist was nervous for me to only be on aspirin (had previous 2xTIA’s), however to start on Pegasys meant close monitoring and this couldn’t happen while away. My GP prescribed pressure stockings for me which I had fitted and wore. Also she asked me to buy and use a machine which pumps the blood around the legs while on the plane. She uses one herself as she had a DVT in a plane.
So I got that and use them both when I fly. My doc said to get up and move around as much as possible, don’t have alcohol on the plane. Don’t oversleep, be aware to keep moving.
I’ve had no problems.

I have been on Pegasys since June 2024 and finding it very good in comparison to Hydrea.
I started on 45mcg each week for 10 weeks and my platelets came down to 450. It was decided to extend it out to once every 10 days which I have been doing and I see the heamatologist after 2 months (in 2 weeks) to see if I am stable at that frequency or if I need to reduce, maintain or extend the days. A recent blood test showed my platelets now at 210. They haven’t been that low in 30 years.

So it will be interesting to see what Dr Cleary suggests when I see her.

The past week my fatigue seems to have lifted. I have begun to do a little exercise so maybe that’s helped

When we travel overseas next year I need to find a good storage container to keep my 3 month supply of Pegasys injections at the right temp for the long haul flights over she couple of days.

Best wishes, Mitch

Hi Mitch,

Welcome to the forum and hope you are able to get to know some of us on our Coffeecatchup.

I was diagnosed with ET in 2005 so am an old hand at this game. I started off on HU but have changed drugs many times over the years. As I have now progressed to MF, I am on Ruxolitinib.

I no longer travel as I am elderly but as I am English and have lived in Australia for 7 years, I did do a lot of long haul flights at one time.

Don’t worry about it all too much. Take the usual precautions as advised by your specialist and friends. Although the fatigue is awful at times and your bad days can scare you, this disease has a habit of presenting surprisingly good days too.


Glad you found us and I am sure in time you will be too. We are a team. We work together to help each other with our own experiences and advice. We try to live normal lives with these rare MPN diseases.

Steve is a ‘fount of knowledge’ although he would never admit it! He always seems to know where to find the advice even if he is not a medic.


Best wishes,
Katie

Hi Mitch. I’m Mark and I too am ET and Jak2+ and was diagnosed in 2014 and initially took HU for two years from 2016. I’ve also been taking aspirin 100mg daily since 2014. I took HU until 2016 but it wasn’t a good fit for me and so from 2018 I’ve been on Pegasys (90 mg’s until a couple of months ago where I’m now down to 67.5 mgs). Pegasys has been a wonder drug for me and I’m now injecting every 4 weeks with all my blood results within target.
Re travelling I too use compression stockings as my main defence against DVT and if travelling with Pegasys syringes you need to keep them chilled so you need a specific small carrying container that has coolant chambers. As I now inject monthly I now inject before I travel and then when I get back so I don’t have to do the whole syringe thing OS.
This is a great group of people who totally understand how hard our MPN journey can be at times.
Cheers
Mark