Travel advice

[Alepai]

Hello-

I have been reading questions and responses this past year since my husband was diagnosed with CLL (stage 0 in January and in August). I can’t tell you how much I have appreciated the forum for advice and support even as a silent member.

Since our goal is to live our life as best we can, we are looking into traveling while we can. We are tentatively planning a trip to Thailand and Cambodia in 9 months but are concerned about his exposure.

What are the questions we need to ask? For those who have been, what advice do you have to limit exposure to disease and infection (are there locations to avoid?) and increase immunity (what vaccines are needed specific for CLL?). Also, do you have recommendations for travel insurance (we live in US)? Is stage 0 treated the same as stages 1-4?

[MarmiteCLL]

Hi Alepai. I am Stage 0 now for three years and just left Thailand for Malaysia. I checked up on which inoculations you have including the flu vaccine and pneumonia as well as others suggested by the CLL specialist. I have become more aware of people sneezing, bad personal habits and large crowds and gave the hand washes, wet antiseptic towels and face masks handy. Besides that it has just being aware of the surroundings, trying not to do too much, managing the tiredness and eating well to keep up my immunity. I do have a good supply of antibiotics which I use as a precaution if feeing a little weird. Life continues with a greater awareness of hygiene challenges but I do avoid the sea and pools- you never know who has done what in them! Enjoy your trips and take specialist advice. PS. I have to be honest that I also use business class on long haul and I feel great physically and mentally.

[Alepai in reply to MarmiteCLL]

Thank you for your reply! It helps to hear of others who aren’t letting the diagnosis keep them from living life.

[closh]

Hi Alepai

First question - is your husband getting sick often? All people with CLL have immune system deficiencies but not to the same extent. I get sick a bit more than usual but nothing too drastic and so don't take any special precautions when travelling. That's worked out fine so far (just back from Canada - got a nagging cold but no big deal).

I've been to both Thailand and Cambodia a few times - they're great - you should go! Thailand has a good medical system, Cambodia less so but you can get any antibiotics etc you need very easily and cheaply. Anything more serious, its a short hop back to Bangkok for treatment. Laos is interesting too, if you'd like to visit somewhere else in the area less developed.

Unless you're planning to stray from the usual tourist areas, I wouldn't worry about malaria etc. You always need to make sure just to drink bottles water and eat freshly cooked food.

Graham

[Alepai]

Thank you, Graham! He hasn’t been sick more in the past year since diagnosis. We’re iffy on Cambodia. Is it the medical systems you’re comparing or the status of development thus risk of diseases?

[tozer]

I have been regularly travelling for the last 3 years whilst under treatment (I +V) including Cambodia, Laos, India, Vietnam, Myanmar, Thailand with no ill effects. (I live in Sydney) I agree with all the other comments re hygiene, care about eating food (I avoid street food which is delicious but subject to more variability in cleanliness). I carry my drugs with me and have a letter for immigration if they check (though they never have done) as they tend to be sensitive to any kinds of drugs in this part of the world. All in this community are living with the the unknown about the future, so lets embrace life, travel where we will and enjoy the world!

[thb4747]

Hi, I’ve done more than 60 overseas trips since being diagnosed in 2001. I take all the same precautions as I do at home. I have had IVIG every 28 days for the last 7 years, so my trips are usually 3 weeks or so. I’ve only had one serious incident which left me hospitalised in Alaska but that was an anaemia issue (AIHA). I have trouble getting travel insurance (I live in New Zealand) but I’m able to get very limited cover. Like Marmite above I fly business class to avoid being too close to other passengers. My CLL specialist gives me a grab bag of antibiotics, prednisone and other medicines to take with me. This year’s plans are for China (anxiously watching developments there), South Africa, Australia and Canada/USA. Go for it. You only live once!

[thb4747]

I should have added I’m currently on a 2-year Venetoclax trial - finishes at the end of April.