I have just come back from A long trip to Niagra Falls Washington and New York . I was diagnosed with ET in May . I was worried about the flight and the very long coach journeys ( we did 1500 miles!) but I drank plenty of water and moved as much as I could . We booked before my diagnosis and the insurance which we get through the bank honoured it . I met 3 pharmacists on the coach that were studying oncology and they had heard of MPN's !! I asked one of them to look into weight gain with hydroxy as I now resemble a baby elephant since taking it ( 11 a week ) and whenever I ask the heamatoligist she says never heard of that .
What I'm trying to say is I'm not going to let this disease hold me back but it does take the dairy off things especially as I still wake up a few mornings and think oh s@£t I have cancer and why are my boobs growing so much ! Lol x
Hi Hellenberry - Your story is very similar to mine as I was diagnosed with ET just 6 days before flying to Santiago in Chile, a flight of over 13 hours. The Haematologist could have told me to cancel the holiday but chose to let me go, with an injection, which my husband had to administer, both on the day of departure from home and similarly before departing from Rio. My insurance was taken out prior to diagnosis and, as with you, it was honoured.
I am on 7 Hydroxy and aspirin a week and have only had a couple of months when I had to take 11 Hydroxy a week and this did not seem to affect me weight wise although I have noticed people on this site stating that they have put on weight with it. I agree with you that we must keep going and try not to let it get us down. I just wish I knew whether some of the aches, pains, stiffness etc., is the disease, the medication, or just getting old!!
Ooo I'd love to go to Rio I hope it is as wonderful as it sounds.
I too would like to know the answer to your last paragraph I'm 62 in my body but my mind has got stuck at about 29 lol .
My doc is great but she seems to be old school and is in the pre cancer camp but surely that leaves us without the pharmaceuticals being interested in research . I asked her if the fact I was always hot had anything to do with the ET and she said no it was probably hormones ! I said but I'm 62 and she said they still go up and down it made me feel younger lol.
As for the weight thing I must confess I might be looking for excuses I gave up smoking a year ago and I love chocolate . Thing is everyone says BUT you look soo much better and so well haha .
I take 28 Hydroxy a week. I struggle to loose weight. I have day & night sweats which are NOT hormonal. My travel insurance company are aware of my diagnoses (ET) and as long as I have not had any blood clots they are happy to insure me.
MPN's are no reason to restrict whatever you are able and want to do. However for future trips make sure you declare everything as you now have an increased risk of thrombosis from ET and increasedrisk of infection from HU. Look around though as most insurance companies use the same algorithm but price vary greatly. Avoid brokers as they can be extortionate
Good for you! I too love to travel, think I've sending my heam in to panic mode at times as I tend to love long haul lol! I drink plenty of water and try to get up as much as possible. Hope you have a great time!
Not had any insurance issues and currently use Staysure but think if I had a blood clot it may change the insurance outcome a little but will deal with that if it ever happens (hopefully not). I refused to let PV hold me down but at times I have to slow down. Sometimes wonder if I push myself too much!
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My Heamatologist said I most likely have ET and mutation tests showed I have JAK2
Myeloproliferative Disorders: The problems of being unusual.
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