Anxious

[Sandra9Burt]

Ive just hit 60yrs old diagnosed wirh ET CALR+ 2017. Platelets 932. Im very anxious about having to take HU if/when my platelets go over 1000. We are planning a holiday to Italy before my next appt in April and Im worried about blood clots whilst flying.

[Sksarj]

Hi Sandra I would be worried too. I was diagnosed with ET 6 years ago with platelets at 800 just 6 days before flying to South America. My consultant allowed me to fly (I was all set to cancel) but I had to start taking the meds hydroxy and aspirin and have an injection of a blood thinner both before each flight ie going and returning. I took the meds whilst on holiday (and have done ever since of course) and I had blood tests for 3 consecutive weeks. Platelets were coming down nicely and all was well. I would definitely recommend you speak to a hematologist before you go on holiday. I have not had to have an injection of blood thinner since as with the medication my platelets have remained very stable and within range and I have flown many miles since then. Hope this helps- good luck. Regards Sue

[Paul123456]

Sandra

There are many on this Board who have no problem with HU, especially on the low dose you are likely to be on.

There is a possible long term risk of progression to MF/AML but even the experts are divided on this, hence nothing conclusive. And this would probably require at least 10 years of HU.

All MPN patients have to balance a basket of risks, principly risk of a stroke, quality of life versus drug side effects (if any).

IMO, top of the pile must be stroke/thrombosis risk. Keeping Platelets under 1,000 or HCT under 0.45 (PV) greatly reduces this risk but it must still be a major consideration. We all have to rely on our Hems for guidance but I would not hesitate to start Peg/HU if so advised.

I assume you are on 75mg Gastro Coated Aspirin? Plus stay well hydrated.

Finally, you may feel a lot better on low dose HU if you are currently experiencing ET burden issues.

[Mazcd Partner MPNVoice]

Hello Sandra, we can all understand how anxious you are feeling about having to take Hydroxycarbamide, we have all been there, it is a very scary time, but if you read the posts on this forum you will see that it is not as scary as you think. Listen to the advice your haematologist gives you and read as much as you can on our website mpnvoice.org.uk

with regards to travel, you should be absolutely fine to travel, many of us do, including long haul flights, you just need to follow the advice from your haematologist with regards to medication, like aspirin, and wearing flight socks etc, you will find some good information on our website about travel.

mpnvoice.org.uk/living-with...

best wishes, Maz

[Sandra9Burt]

Thankyou for your replies it helps to be part of a group who are experiencing the same challenges.

Sandra

[mhos61]

Hi Sandra,

If and when you have to commence HU, it’s really not that bad. I’ve been on it for two years with no problems, and it does the job (reduce platelets).

As for your holiday to Italy, it’s short haul really. Just be sensible, take your aspirin, keep hydrated, rotate your ankles on flight etc, and most importantly, enjoy your holiday.

Mary x

[mhos61]

In regards to the above statement I made.....Italy being short haul. I’m assuming you’re in the UK?

[Roger41]

Hi, I was diagnosed be for my appointment.

The advice I was given, try to keep calm two days before your flight, keep well hydrated, wear your flight socks and don't forget your aspirin. I have been on two flights since diagnosis.

There is no need to be worried , you are not alone and all members on this web site experienced the worries and concerns at first appointment.

Ask your team if they need to prescribe any other blood thinners?6months down the.line I am at maintaining dose of my hydro, and on three monthly appointments.I have had my mot at the surgery today and I have no issues.

Keep in touch with this very beneficial site. All will be well.

[Sandra9Burt]

thank you