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Traveling to Africa, Asia, Amsterdam, or Acadia National Park in Maine: Lessons Learned While on the Road With CLL (Chronic Lymphocytic Leukemia)

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

By Larry Marion

Eager to do revenge travel? In a post-COVID pandemic world, we all feel the urge to travel. However, no matter where or when you’re traveling, reducing the risks to our weakened immune system is crucial. For anyone with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL / SLL), either in watch and wait or in treatment, taking various precautions can mean the difference between a beautiful experience and a miserable one. The more you can reduce travel risks, the more rewarding the trip.

The first step in travel-related CLL-risk reduction is to discuss your upcoming trip with your hematology- oncologist (heme/onc), even if you’re going on a vacation within the U.S. Here are some questions for you to discuss with your heme/onc:

  • Do you have a way of reaching your heme/onc or his nurse practitioner while traveling?
  • Is there a local hospital or major medical center near your destination for a blood draw if you need one? Some doctors are reluctant to rely on some out-of-town clinics, so it pays to know in advance where you can get a blood draw, treatment, or other assistance that will cooperate with your doctors.
  • What about prophylactic measures? Considering our compromised immune systems, should you have an antibiotic with your toiletries? And should it be the handy and almost ubiquitous azithromycin (Z-pack) or something stronger, like Cipro? Most doctors are extremely reluctant to provide you with a prescription for an antibiotic as a prophylactic since overuse of these meds has led to many problems. Regardless, you and your heme/onc should discuss how you should handle colds, fevers, and other mild maladies that could quickly escalate into something worse, such as bronchitis or pneumonia.
  • All routine and emergency medications should be packed on your carry-on baggage and not trusted to checked luggage.

Bad colds deteriorating into something much more serious happened to me routinely after 11 cycles of chemo had rendered my immune system ineffective. For example, while traveling from New England to Florida for the winter, I developed pneumonia three years in a row. Take my word for it; you don’t want to let a lousy cold escalate into bronchitis and pneumonia. Nasty meds are involved, which are to be avoided.

At the very least, ensure you have the right over-the-counter meds to deal with colds, fevers, and stomach issues. Nothing like Lomotil to stop diarrhea from ruining a trip.

Which anti-cold tablets or liquids work for you? Have any of them expired? Discuss with your heme/onc which analgesic you should take—acetaminophen, Naprosyn, ibuprofen, or others. You may be surprised to learn that some of these drugs are counter-indicated for those taking certain anti-CLL meds. Dr. Brian Koffman’s blog about his trip to Africa included a listing of meds we should travel with no matter where we are going.

Three other key prophylactics you can’t get enough of are N95 masks, hand sanitizer, and sunscreen. Strong sunscreen is a pre-requisite if you’re traveling anywhere the sun shines. Here’s an excellent CLL Society article about our vulnerability to skin cancer with more details about why you need sunscreen and what kind to get.

And don’t forget a wide-brimmed hat!

Another pre-requisite for us CLLers is a fresh tube of antibiotic ointment in case of cuts, scrapes, or scratches. Make sure it hasn’t expired. Antibiotics are not forever meds. Do you have enough bandages, gauze pads and tape, and other first aid items to take care of a wound for several days?

The next step in managing travel risk is visiting your hospital’s travel clinic if your heme/onc recommends it. And if they don’t, ask about it. At the clinic, you’ll meet with an infectious disease specialist who should have access to your medical records so you and the doctor can have a complete and informed discussion about which shots and/or prescription pills are necessary.

Don’t think you need this advice if you’re staying in the U.S. and avoiding exotic destinations? You could be wrong and learn that the hard way.

For example, suppose you’re going skiing in Colorado. Maybe you and the travel clinic should discuss anti-altitude sickness medication. While we were in Tibet, an asthmatic member of our tour group became seriously ill from thin air at 12,500 feet. After an overnight stay in a local hospital, she was fine. Still, she learned the hard way the value of visiting a travel clinic before going on a trip.

A visit to a travel clinic can be helpful in other ways. First, send a copy of your itinerary to the clinic before the meeting. My infectious disease expert knew which areas I would visit and provided specific guidance about important precautions. In my case, going to Tanzania meant a typhoid fever vaccine and a prescription for anti-malaria meds. In addition, she wrote a Certificate of Vaccine Exemption for immigration officials in Tanzania, the Netherlands, and elsewhere to explain why I couldn’t have the anti-yellow fever shot usually recommended for certain parts of East Africa. Since it’s a live vaccine, that’s a no-no for us with compromised immune systems.  

If a travel clinic is not an option, your primary care physician may be able to help, but you should be well prepared for your visit.

The CDC offers helpful and up top date travel advice that can be researched by country and disease.

As Dr. Koffman noted in his blog, deciding what to eat and what not to eat or drink when traveling anywhere combines art and science. I didn’t touch anything fresh or uncooked for three days in Africa. I didn’t even eat cheese since we read that African milk isn’t pasteurized. Meanwhile, our cousin traveling with us ate everything at the lodge buffets. He reported no ill effects from the food–the food was prepared carefully for overseas tourists. Then I indulged in everything, including many fine-layer cakes (I have several sweet teeth). As Dr. Koffman noted, vegetarians visiting Tanzania and Kenya will have an easier time finding a meal than in Texas.

And what about your medical records? Do you have a copy of your list of meds, diagnosis, treatment history, and other important and relevant information? Is a hard copy in your toiletry bag? Is the digital version on a flash drive? In your personal cloud storage? In your smartphone? If you’re not conscious, how does an EMT access your information in an emergency?

Here’s another tip—load an In Case of Emergency app on your phone. On the internet, you can find reviews comparing the various free apps (I picked the Medical ID app). Load your essential medical information, including the contact name and the number of your heme/onc, into the app on your smartphone. You’re all set to travel since you’ve reduced the risks to maximize the rewards.

Bon Voyage!

Larry Marion was diagnosed with CLL in late 2005 (11q, unmutated, complex karyotype). Tx included PCR, Revlimid, BR, ibrutinib, and venetoclax. He has been uMRD since late 2020. Before he retired, Marion was a science and financial writer and editor for various business and technology publications.

CLL Society - Living With CLL

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