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Foreign Holidays

Hi All
Holidays are so important and this year we are holidaying in the UK. Brian who is cml is worried about coping with upset stomachs abroad. At home it is a real nuisance visiting bathroom at least 6 times a day because of cml, he is on dasatanib - he is not keen to take immodium on a regular basis and just gets on with it. Maybe he should!
Any ideas, we would really like to take a holiday to Italy sometime in future - yes please!
So again any insights, life does have to be lived and the drugs are wonderful plus side effects but its important to do the best within the limits.
Thanks for taking time to read this and looking forward to hearing your views.
Much Love
Chris

Dear Chris

I am sorry to hear that Brian has problems of the bathroom kind! However, my suggestions on holidays abroad would be just to say 'Go for it!!'.

Granted, I don't have any digestive problems with our little orange bullet, and I have also only had CML for 2 years. But I really do enjoy travelling and in those 2 years have been lucky enough to go to Hong Kong and Corsica, and will be off to Canada in 2 weeks time. One of the first questions I asked my consultant on diagnosis was 'Can I still go abroad?' and he said 'yes, anywhere, but be careful about food in exotic locations.' Strange what you think of when your world is being turned upsidedown isn't it! :-)

So - go for it! The world is your oyster! I am sure there are ways to deal with tummy problems, as with other side effects - plan your route carefully to make sure there are good toilets en route, maybe you know which motorway service stations near you are clean and which aren't....try and fly from your local airport so that the journey isn;t too long to get there...look for hotel reviews which talk about high standards of cleanliness, tripadvisor.co.uk is really good here and gives travellers photos of the insides of hotels often...or go for self catering accomodation which gives you more personal space. Think about whether you want to go on an organised holiday where getting to a loo at any given moment might be tricky, but would have the benefit of an ENglish speaking rep who could help with finding facilities if needed. Or maybe a holiday in a villa with more privacy would suit you better. If going to a country where the local language is not English, I know it sounds bizarre, but maybe try to learn the necessary vocabulary in order to be directed to a toilet quickly!! [sorry!!]

And, very importantly, make sure you have good holiday insurance which will cover CML - there is a thread about this very recently. I found Age Concern good as well - you don't have to be >60 to get insurance with them

I think with a little extra thought and planning you will be able to come up with a good plan, which would make life easier for Brian whilst you are away.

Have a great holiday!!

Regards, Janet

dear Chris,

maybe it would be an idea for Brian to talk to his doctor about splitting the dose? I understand that he is on Sprycel and this might not be possible but given that this side effect is also experienced with Glivec and splitting the dose has worked for some people.. see Phil's post about this below... then it might work for Brian.

best wishes,
Sandy

Hi Chris, sorry to hear about Brians upset tum, mine has been very bad since being on Glivec (dx sept 07). I have been quite greedy with holidays this year (making up for lost time!) having complained to my consultant about not being able to plan anything for fear of an urgent loo visit, he prescribed me Codeine Phosphate which has been a life saver for me and means I can plan trips even if its just out for the day, whithout having to plan the trip around the nearest loo.I can take up to 2 tablet 3 times a day, but at the most have only had to take 2 tablets in a day.

Whilst I am here, my consultant has reduced my dose of Glivec to 200mgs from 400 because of the side effects. this is quite scary! He would like to change the drug to another but the PCT are reluctant to fund it. I am to be on the reduced dose only for 4 weeks as he is expecting everything to go up again. I am quite worried about this. However, I have had minimal side effect on the reduced dose & feel much better in myself but get very tired by the end of the day. Has anyone else been on a reduced dose & been ok?
Thanks, Ali

Dear Ali,

200mg is below the internationally agreed effective dose of imatinib/Glivec for an adult.
I suggest that you ask to be referred to an CML centre of excellence so that you can be treated by doctors that understand how to manage doseage and side effects.

To reduce your dose to 200mg may well lessen your side effects but is not answer to your problems as your disease will not be controlled in the long term.
If your PCT is refusing to fund dasatinib/Sprycel then your doctor should help you appeal against this decision by using the appeals process. This is through a PCT's 'Exceptional Treatment' Panel.

There is an excellent booklet which advises doctors and consultants on how to best use this process.
It was written by Peter Telford who is a barrister specialising in supporting patients who are refused treatment by their PCT, and was launched at the second UK Parliamentary Summit on Rarer Cancers
....See under the Newswire for a PDF copy of this booklet and a report about the Rarer Cancer Summit, which was organised by the Rarer Cancer Forum.
www.rarercancerforum.org.uk

I recommend that you get a second opinion about the best way to manage your therapy. Where are you currently being treated?

Sandy