Travel with CLL has come up on this site. Here are some travel tips my wife & I follow.
My CLL: Diagnosed April 2019 with CLL type B deletion P17. I live in Costa Rica.
Treatment: 8 infusions of rituximab+., then started 3 ibrutinib 140 mg per day in March 2020..
My wife and I started travel again after 2 years. May & June to Germany, Danube River, Hungary; July Aruba 10 days, Nov & Dec SE Asia, Mekong River, Bali. It involved 12 flights in total.
Masks – vital. Take along a couple of spare boxes to replace masks dropped, worn more than half a dozen times, and to have extras in various clothes you bring with you. Wear them full time in airports, on planes, taxis, buses, or anywhere you are close to other people,
Vaccine – My wife and I get another shot if it is more than a few months from the last one to be sure of full protection. I had my fifth shot and my wife had her fourth.
Baggage – Take only carry on baggage. You will avoid the crush waiting for checked bags, you will be ahead of those with checked bags for immigration and baggage inspections plus the airline won't lose your bags. You also have access to anything you have packed while in flight.
Class – If you can pay the price, it is safer to fly business class. It reduces exposure to others as the check-in line is quicker, you are off the plane first so avoid the crush in the aisle getting bags from the overhead bins, you are first in customs and immigration lines for your flight, you will be able to wait in a well spaced lounge before boarding or between flights. Business seating has more space, and most long flights now have private cubicles or pods so no one is near you.
Travel Companion – If you travel with someone you know does not have covid you will occupy both seats in a two seat configuration. There is nothing worse than being trapped in a window seat beside a stranger who is hacking and coughing his way through a flight. If travelling economy where only 3 seats abreast are available, book the window and aisle, as airlines will book the seat between you only on a full flight, and the person with the middle seat gladly change for aisle or window.
Airline – Business class on most major airlines have wide seats two abreast. On longer routes many have pods or cubicles where you are not seated nest to anyone. Even adjacent pods have dividing separators for privacy. I have flown on most of the world's major airlines, and would rank Singapore Airlines well ahead of the pack, gradually going down to Delta who earned last place, both for comfort and covid protection. If flying Air Canada be cautions – they operate two services. Avoid flying Air Canada Rouge – they use old equipment, are not as good on covid space or comfort.
Wheel Chairs – The service is free and available around the world. My knees and ankles are pretty shot after a hard life. I can walk, but it is painful over longer distances. There is no need to prove disability and there is no charge for the service. A wheel chair can be arranged by asking the agent as you check in - it will be waiting at your destination. The people who push wheel chairs have often been at it for years and know routes inside the airport not available to others, and know the staff in all departments They are usually free to set their own schedule so are not rushed. On occasion I've been pushed to rental car areas, or to different terminals some distance away. I vary the tip depending on the service there is no set amount. For covid protection it often keeps your out of the crowded areas.
I hope you can take advantage of some travel and that these tips help.
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Thank you for posting these tips. I was just diagnosed with CLL in October '22 and I've been wondering if I will ever travel again.
Hopefully your CLL with be manageable with pills. Welcome to the site, you are on the right place for a wealth of information on everything to do with CLL.
What I do there is take at least 3 times the ibrutinib I will need in half a dozen different containers. They fit into corners for purses, jackets and so on. If one or even two disappear I'm still OK.
That sounds good to me - you take an accommodation you are certain is safe with you and change the view from the window as you like. That is still travel. I agree all the way with only N95 masks.
Having just traveled for 6 weeks to Australia, I also chose the least-used public restrooms in airports, hotel, lobbies, and other venues by going to the one for handicapped people of both genders (or with diaper changing services) which are for one person only.
Having done travel my 1st 2 years with CLL and planning another summer trip for 2023, I'd also mention to:
1. Go early to indoor locations. When we were in Las Vegas, we did the Atomic Museum and Mob Museum as the 1st visitors to the building at the open. We didn't see more than 10 people there the whole time, although we were out in time for lunch.
2. Go to popular travel sites when people probably won't be there - most travel locations have a "prime" time which usually correlates when they have big activities or free entertainment. Don't go in those periods. Instead, go right before and after those periods.
3. Drive, unless you have to fly. And if you have to fly, go direct. It just cuts down your intermixing with tons of people.
4. Stay somewhere that gives you your own bed and bedroom, your own kitchen, and your own bathroom. Sticking to as normal a day (I always do my afternoon green tea, which becomes the break at the condo on our trips) keeps your stress level way down.
5. Don't plan too much or don't do too much. Just tell yourself you'll be back and you'll see what you'll see.
PS - We did Las Vegas in 2021, Busch Gardens (when a planned storm was coming - see go when people aren't going - the storm was gonna arrive at 6pm, and we figured I wasn't gonna make it past 6pm anyway, which worked out GREAT for lines and crowds) and Williamsburg in 2022, and we're doing Myrtle Beach for 2023.
Good ideas. Although I haven't flown since Covid, I often used a wheelchair service when I did, since I have M.S. in addition to Cll. Although there is no charge for the wheelchair it is customary to tip the attendant. (10-20$$) I also requested the wheelchair in advance, usually when I made the ticket reservation.
I found you do not need to be a wheel chair user to qualify for special needs early boarding. Also don't forget the wipes to clean all surfaces on your tray and arms of your seat.
For USA flights, here is a site that has a grid on options by airline when flights are cancelled or delayed (transportation.gov/airconsu... ). Plan to ask for meal, hotel, transport vouchers on the airlines that have it, and know which airlines can rebook on different airlines according to their promises they made to government regulators.
Several additions, from a seasoned traveler with 3M+ flight miles, about 100k of which were post-CLL diagnosis but pre-treatment:
Destinations: pick outdoor-oriented destinations (like Costa Rica, which is beautiful ) or destinations where personal hygiene is a high cultural priority (Tokyo). Warm weather helps. Places with a lot of outdoor restaurants help.
Pick your risks: statistics on air travel and COVID are excellent - airplanes tend to refresh air frequently. Business conferences and meeting rooms, not so much. Karaoke bars and intimate French bistros, forget it.
Manage your risks: Pick less crowded travel times -- late or early flights, Tuesdays. If you fly, having access to a paid airport lounge helps keep exposure down, and as noted, business class helps a lot. Driving is good too since you pick your companions in the car. Pick hotels with reliable cleaning services -- the nicer US major brands tend to be OK, as do higher-end resorts --- or go the AirBnB route and avoid people altogether. For US travelers, TSA Pre and Global Entry will help you avoid the worst of the security lines. Rent your car vs. taxis and Ubers of questionable contagion environments.
Equip well: I carry the following: A box of N95 certified masks from reputable suppliers (I like the Harley foldable masks from Project N95) . Personal sanitizer. Bandages with healing agents pre-applied. Supplies of major antibiotics, anti-malaria, anti-diarrheal, pain medications. Cleaning wipes.
Have a backup plan: travel insurance helps cover emergency situations and you can get single-trip travel insurance at reasonable pricing with pre-existing condition, COVID, and medical evacuation coverage along with interpreter services in case you need a medical discussion in a foreign land. Allianz has one good offering but there are several.
Know when to quit: I am entering treatment next month and have taken what I expect to be my last flight for "one to two years" (says my oncologist). The additional potential immune system impacts for me make the risk too high. But in W&W without significant neutropenia, etc. I traveled successfully multiple times. I'm glad I did.
I will say that for business travel, it was getting increasingly challenging to manage the risks. Multiple colleagues getting COVID and RSV, and the difficulties in doing business while masked and distanced, were what triggered me to make substantial career changes. Not fun, but the right thing to do. Managing risk in personal travel is a lot easier.
Good advice that I didn't mention, but generally follow. I have been on ibrutinib since March 2020 and it has been no problem. It will depend on the treatment I would think. I hope you are not grounded for two years - travel is very addictive!! All the best for your treatment and have a good 2023.
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) or destinations where personal hygiene is a high cultural priority (Tokyo). Warm weather helps. Places with a lot of outdoor restaurants help.
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