A question on air travel (long haul) following a recent diagnosis of Essential thrombocythemia (ET) with JAK 2 positive. Currently being treated with aspirin and due to start treatment of Hydroxycarbamide (not started on this drug). I have a trip booked which is an 11 hour flight with a 2 hour layover, so 5 hrs plus 6 hrs. Does anyone have any experience of travelling long haul after diagnosis? Did the same journey last year (March ‘23) before being diagnosed and, although I was unaware at the time I have been told I’ve probably had Essential thrombocythemia (ET) for at least 10 years!
Feeling slightly anxious about the trip now though and intend to discuss at my appointment later this week.
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Hi @Jackiefc Yes, the best idea is to discuss this at your appointment in the week with the people who know your whole medical history.
Others might share their experiences though.
Probably, if it is OK to fly, pressure socks for flying, keep well hydrated, regular exercise on plane and whilst you are sitting do sitting exercises for your legs.
You might also see what the Blood Cancer UK say about it on their support line on 0808 2080 888.
Please do let us know how you get on and try not to let anxiety spoil your holiday
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Hello @Jackiefc
Thank you for posting your question about travel with Essential thrombocythemia (ET).
A trip on a plane sounds exciting, and a holiday is certainly something to look forward to, so it is a shame you are anxious about this.
Certainly speak to your Haematologist this week, I am sure they can reassure you once they look at your recent blood tests and they can advise if they think you need other meds or other considerations. It’s good to know you are on aspirin though, this can help reduce clotting risk, which is one of the flight risks.
Now you have awareness of your Essential thrombocythemia (ET), I am sure you will do a few more laps of the plane aisles and your foot/ankle exercises whilst sitting, (which you probably didn’t do so many on your last flight) - all as @Erica has suggested.
Also, in case it is helpful we have a travel page on our website, with some good tips: travel/bloodcancer.
Do keep us posted on what your Haematologist says, or any recommendations they make.
Take care, Heidi.
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Thank you for your reply 
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Thank you for your reassurances
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Hey there @Jackiefc, how exciting to be taking a trip! I had similar concerns to you last year when I was planning long haul flights. This was after being diagnosed with Polycythaemia vera (PV) but before my daily hydroxyurea had kicked in. I hope it’s not the case for you but I experienced severe cancer-related fatigue, so much so that I couldn’t finish planning my trip, let alone go on it.
Thankfully the fatigue is not so bad now, but I’ll be wearing compression socks and doing foot exercises and wandering the aisles when I fly in future. Glad to hear taking aspirin helps with reducing clotting whilst flying, thanks @Heidi_BloodCancerUK. I hope you don’t get the nasty fatigue after starting hydroxyurea and can fly with abandon, @Jackiefc!
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Thank you for your reply @Duncan, for sure I will be more aware than previously by wearing compression socks and exercising more. Interested with your comment about fatigue though as my consultant is adamant that the fatigue I feel is not related to the Blood Cancer. Nor, for that matter, is the ‘bone’ pain I experience at night in my lower right leg. He has, in fact, instructed me to follow-up with my GP on both of these symptoms, so we will see.
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Oh that’s interesting about your haematologist not thinking your fatigue relates to your diagnosis, @Jackiefc. And wow you’ve possibly lived with Essential thrombocythemia (ET) for a decade?! You’ve been doing something right to tolerate that!
I’m not a doctor but the research around MPNs does show that over 80 % of us will experience cancer-related fatigue (it even has its own acronym, CRF, as it’s so common!), either due to the effects on our bodies of the overproduction of blood and/or from our bodies reacting to medicines. I thankfully had no symptoms of Polycythaemia vera (PV) prior to diagnosis last year and then after starting hydroxyurea I had severe fatigue, which was a pretty clear cause and effect.
Another non-medical opinion of mine is that I noticed old historic injuries like tendinitis and another sprain started aching and playing up after starting hydroxyurea, like they were being affected by the medicine. Those faded too. Wonder if it’s a similar thing with your leg?
I had to change haematologist for my fatigue and other symptoms to be taken seriously and now my new doctor is testing me for other stuff, like apnoea.
Anyway, enjoy your holiday planning and compression sock shopping! There’s some nice ones out there nowadays 
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