CARL- ET (Need Your Help)

[tey_joanne_1984]

Hi,

I would like to check with you that my hubby has CARL Gene mutation, ET (high platelet) and he needs to travel to China this weekend. It takes about 5-6 hours to reach there. I would like to know is there any item or thing he needs to pay attention?

Besides that, the weather in China is very cold now, around -9 degree and i read an article just now. Cold weather will cause the platelet increase, blood vessel become narrow and increase the chances of stroke.

Is that true?

Please advise.

Thank you.

Best Regards,

Joanne

[Hidden]

Hi Joanne

I have ET jak 2 mutation. Flying was a concern of mine and I was worried about flying especially as my ET was diagnosed following a thrombosis / clot. I am not a doctor but I got some advice from my doctor. Obviously I am different form your hubby as I have had a clot but Some of this advice is generic and can apply to even those without An MPN who are worried about developing a DVT.

Keep hydrated during flight, drink water. Move around during flight to increase circulation, get up walk up aisle etc. Wear compression socks, I got them prescribed through doctor, take shoes off and excercise the feet, I made circles with feet, wriggled toes etc.

I only flown short haul but all has been ok, might need to do more if flying long haul due to clot. I would say if you are worried just check with his doctor if there is anything he should be doing if only for reassurance. Hope this helps. I am sure others will chip in with advice. Liz Cx

[tey_joanne_1984 in reply to Hidden]

Yup, thanks for ur replied.

[Mazcd Partner MPNVoice]

Hello Joanne, your husband will need to check with his haematologist that he is fit to fly on a long haul flight, his haematologist will also give him the relevant advice he will need regarding his medication, hydration, and whether or not they would recommend he wears flight socks etc. It is always advisable to check with your haematologist before flying. Kind regards, Maz

[tey_joanne_1984 in reply to Mazcd]

He called his heomatologist yesterday, doctor just told him drink more water , wear flight sock. I am just worrying the cold weather will cause his sickness become worst?

[tracey13]

My husband was told he should have a tinzaparin blood thinner injection if flying more than 3 hours.

[AndyT]

Hi Joanne - I've been prescribed Tinzaparin when flying long haul too but as others have said your husband really needs to check with his doctor what is right for him. Common sense measures like staying hydrated and moving around during the flight are definitely sensible too. I have flown many times since finding I had ET and have never had any problems.

[tey_joanne_1984 in reply to AndyT]

Hi Andy,

So for the cold weather will cause platelet increase theory is this true? I am curious as i believe Europe countries have winter season and how you guys survive with that.

[AndyT]

Hi Joanne - I don't know if cold weather increases platelets but I've heard it can make your blood thicker - I get peripheral circulation issues in fingers and toes in cold weather but nothing worse than that - tell him to make sure he keeps warm..!

[tey_joanne_1984 in reply to AndyT]

Thanks Andy~~

[tey_joanne_1984 in reply to AndyT]

Andy, is this ET, CARL positive is one type of blood cancer? Is this cancer?

[Mazcd Partner MPNVoice in reply to tey_joanne_1984]

Hi Joanne, ET, and MF and PV (MPNs) are classed as a type of blood cancer, they are also sometimes called blood disorders, the World Health Organization (WHO) reclassified MPNs in 2008 as being neoplasms which means new growth which is a term doctors use both for cancers - malignant neoplasms and non-cancerous tumours, benign neoplasms and as MPNs including ET are characterized by uncontrolled cell growth they are considered by many haematologists and cancer organizations as types of blood cancer, but do remember that the symptoms and prognosis can vary widely and your husband will be advised by his haematologist about his prognosis. I know it is very worrying when you read this sort of information, if it would help I can send you some of our information booklets, if you email me at [e-mail] with your full postal address I can put some in the post for you, I am sure they will help you and your husband understand more about his ET and may also give him some ideas on what questions he needs to ask his haematologist when he next sees him. Maz

[tey_joanne_1984 in reply to Mazcd]

The word CANCER made me felt very sad now.

I thgt tis is only blood disorder.....

[Mazcd Partner MPNVoice in reply to tey_joanne_1984]

Hello Joanne, as I said, I know it can be very worrying to hear the word cancer, but please do remember that it is very low down on the scale of blood cancers, try not to worry too much. Maz

[tey_joanne_1984 in reply to Mazcd]

Thanks for ur advise. I will try to calm dowm myself and accept the CANCER word.

[Polly-PV]

Hi Joanne. I totally understand-you read that word, the dreaded C word and your thoughts & fears go into overdrive. MPNs are a rare form of cancer but, for the most part, are manageable through medication. A good percentage of the guys on here are on some sort of medication which enable them to live pretty normal lives and it's something you just learn to live with. Yes, your lovely husband has a blood disorder but it doesn't have him or define him and I'm thinking how lucky and blessed he is to have your support. I'll use the old analogy of the football leagues where cancers like lung, breast and testicular are up there in Division 1 whilst us MPNers are way down in Division 6 in terms of life change impact I suppose you could say. Old timers -please feel free to correct me here!

Joanne, use this site for support, info & to maintain your own wellbeing-there are some extremely knowledgeable people on here and it's also a platform where you can learn about any new research taking place. We're so glad you joined us and a big warm welcome to our world. Much love, Poll X

[tey_joanne_1984 in reply to Polly-PV]

Thanks polly

[Kerri2]

I don't know if you have water parks there? We have these amusement parks with crazy water slides, etc... They have one in which you float along on intertubes, I think of my ET as the "Lazy River " of blood cancers.