Hi all! Newly diagnosed with ET (MPL) in Nov/Dec 2022. Not exactly the way you want to spend Christmas holidays - having BMB (VAF 9%), diagnosed with a rare disease and a rare mutation to boot! However, the silver lining has been that given my age (42) and medical history, I'm considered very low risk and am on daily baby aspirin, with follow ups with my wonderful MPN specialist every 4 months. I'm grateful to be feeling well. I do struggle with occasional feelings of anxiety related to having this diagnosis at a relatively young age, and not knowing what the future holds (of course no one does, but the thought of serious complications or progression are frightening), especially with two young sons (ages 6 & 9) that I hope to see grow up! I do try to tell myself that these are things that are out of my control and instead focus on being fully present and enjoying my time with them.
My husband and I have a holiday planned in August - flying from NYC to Paris (approximately a 7 hr flight) with our sons. This will be my first flight since my diagnosis and I am anxious to take all precautions necessary to prevent clots. I will be discussing this further with my MPN specialist at my visit next month, but am curious what advice you may have received, what advice you have from your own experiences and what questions to ask my specialist specifically as it pertains to (air) travel so that I am well prepared.
Thanks in advance for your help. It's truly been a Godsend to come across this forum.
I wish you all well.
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ETinNYC
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I have flown many times with a MPN, including between the USA and Europe. I have never had an issue with it. The things I do to minimize problems is to always get an aisle seat. With extra leg room when possible. I make sure to get up and move about every hour. This reduces risk of a thrombosis and makes me more conformable. I do not do anything else. You will hear from some on the forum that they use compression socks and/or additional dose of blood thinning meds.
The degree of risk of thrombosis when on a long flight needs to be assessed on an individual basis. It would need to include prior history of thrombosis, other MPN symptoms, and co-occurring medical conditions. The potential benefits of any recommended intervention would have to be weighed against the risk (e.g., increased risk of hemorrhage with higher dose blood thinning med). Your MPN Specialist can give you the best case-specific advice on this.
I was diagnosed with ET over 30 years ago. It progressed to PV about 9 years ago. I have lived a good life and at age 67 continue to do so. I raised two children, now aged 40 and 37 and enjoy spending time with my granddaughter, It is often said that you are more likely to die with ET than from it. Moreover, treatment options have improved significantly in recent years. I am now taking a low dose of Besremi. My JAK2 VAF has reduced from 38% to 9% in 18 months. I feel better now than I did 10 years ago.
Suggest that you think beyond raising your two children. Look forward to spending time with your grandchildren. Being a grandparent is great! Plan to do it.
Hi ETinNYC! I cannot add anything to hunter's great response. It's the same info my son (20y/o) received from his MPN specialist at Mount Sinai. I'm writing to ask, if you're comfortable sharing, who do you see in NYC for ET?
Enjoy your trip! We have a home in the South of France that was a major influence on my son when he was young. I hope your kids can soak it all in. Travel, family, joie de vie...these are the important things in life. Bon voyage et bon courage!
Hi! Welcome to the club! I was diagnosed in November 2021 with ET, MPL variant, eventually after a BMB. I am now 67 years of age and feeling a lot better than pre treatment! I take daily low dose aspirin and Hyrea 500 daily with a double dose at the weekends. Despite the occasional night sweat, bouts of fatigue, itching and other annoying symptoms of the disease or side effects of the treatment, I feel well. I am now feeling up to exercising and that has really helped me as has drinking loads- 3 pints( not really loads!) of water. The biggest challenge has been accepting that I now take meds and have a disease- but I am getting there!
I am travelling to India next March and have consulted with my haematologist before booking and have been cleared to go. I may need an injection to prevent clots before I go but that will be decided nearer the time.
Just check with the experts before you go as we are all so different in both the impact of the MPN and our response to treatment. This site has also been a godsend for me. Folks are so willing to go the extra mile in sharing experiences and research.
Hello and welcome here. I can reiterate everything Hunter has said. I have Et Jak2 and on hydroxy . I also take 75mg Aspirin. I have used flight socks on long haul flights prior to my diagnosis. I always try and have extra leg room and make sure I move around, and circle my feet and legs while sitting at intervals. Thankfully I have no history of thrombosis and have taken several long flights since my diagnosis. I have one later in the year from UK to USA so will make exactly the same provisions. Hope this helps.
Hello, I understand how you feel at the beginning, when you are first diagnosed, but this as a great group of people to ask for advice and looking at MPN Voice is extremely useful too.
I am British but moved to the US for 12 years, with my husband, and actually we had our children out there. We are all now back in the UK but of course we did a lot of transatlantic flights during this time to visit family and still do. Do check with your consultant but I always double my Aspirin a couple of days before I fly and continue this until 2 days after I land and then repeat on the return flight. Also I use flight compression socks from compressionsocks.co.uk and move around lots on the flight and at the airport and drink plenty of water avoiding caffeine & alcohol. Hope you have a great trip.
On a more general front I was diagnosed at 27 with ET and will have had this for 30 years next year. Modern medicine has really moved on, since my diagnosis, which is really positive and once you have come to terms with what you have and have regular checkups, my advice would be to enjoy your life at this exciting time with your young children.
you have some good advice already, be sure to hydrate , not over hydrate though, the day before flying and during and after flight , you can Google how much water to drink on a long haul, try to avoid alcohol or too much coffee before,during and after for a day or two, they dehydrate, as do eating nuts.
Someone here mentioned they double their aspirin, that maybe right for them but definitely don’t do this unless your Haem agrees. I asked a few experts about that and for me they said definitely no. Get up every hour or two max , maybe compression socks, they won’t do anny harm, ask Haem. Enjoy the trip.
Hi, I cannot add much to the great advice already given, just wanted to bring my testimony as I have flown to the other side of the planet (14 hr flights) several times since my PV diagnosis four years ago. I do get up frequently and walk about (and do a little leg exercises every so often), wear compression socks and drink a fair amount of water . I am on aspirin and Pegasys (but did fly a few times before going on medication ) . So far my diagnosis has not affected my travels.
Don’t worry about flying . I was diagnosed a year ago & because I volunteer on tall ship sailing for disabled I have continued on long haul flights all over the World . I have had no reactions whatsoever. I drink lots water no alcohol & wear flight socks walk around take your aspirin you will be fine . It is better to have this diagnosis than not & have something lurking . This way you get get knowledgeable on it & hopefully feel no different. I am on interferon injections monthly due to being over 60 but feel great . I have excellent advice from MPN Professor Harrison & Haemotology . Mine was discovered after a sports injury & like you I was so shocked however I made intentions to get on with life you can control this . Julia UK 👍
I just had this discussion with my hematologist. I plan to fly from US to Italy and have been very anxious about long flight. I have no history of thrombosis and my platelets have been very well managed since going on HU. He said I am low risk but if I wanted injection to prevent clots to let him know.
Glad you found this great community. I too have ET (Jak2) was diagnosed at 50 although form blood work probably had it since I was about 40. Have 4 kids so completely relate to the sentiments. I am lucky to have a great MPN specialist who from the start sat me down and said "you are more likely to die with ET than from ET" and barring any other complications (of course no guarantees but made me feel better) you will dance at your kids' weddings...so that helped me quite a bit and this community has been a true godsend as well.
I travel long haul for work on average twice a month. Flights of between 12 and 16 hours each way. My MPN specialist just suggested that I make sure I move more often - get up and walk - stretch - he said given my age and low risk profile he did not think compression socks were necessary but that they couldn't hurt. Initially he had me take an extra aspirin on the days of the long flights (so one in morning and one about halfway through) but recently told me he did not think that was necessary any more.
Good news is that you found this community and that new treatments are being developed all the time.
I am glad to read of all these flyers, as my doctor scared me and said that both my HCT and platelets need to be in the safe zone if I want to fly. I have no clotting history and am otherwise in good health, so his advice seems severe, but I am being cautious right now. If I had a wonderful trip planned, I might seek other measures to enable my participation.
I would like to thank you all for the reassuring words - both re: travel and re: ET. I feel fortunate to have found this kind and thoughtful community, as I come to grips with my new reality. While my husband, other family members and friends have been massively supportive, it's great to have a group to reach out to who have "been there" and can give helpful advice and insights.
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