Hello everyone,
I am wondering about traveling on a plane and all it entails what with people
All over and maybe carrying what illnesses,who knows. I'm not phobic,but with the immune system compromised as it is, how will I protect myself?
And I was thinking about getting another pneumonia vaccine because it's been awhile.
Any thoughts?
Gm
I travel more than I don't travel - throughout Asia, mostly in China, sometimes to third-world countries. I should probably take more precautions, but I really haven't had any problems with regards to CLL. (I take Imbruvica now.) That said, I got a nasty cold a few weeks ago and just started 10 days of antibiotics.
I'm 62 and been on w&w for 3 years and am nearing treatment. However i have not let it prevent me from traveling. Last year we spent 2 weeks in Hawaii and another 2 weeks on a European river cruise. The year before we were in the carribean for several weeks. I always make sure i get my flu vaccination (the stronger version) and that my pneumonia vaccinations (13 and 23 i believe) are up to date. My doctor also gives me 2 weeks worth of antibotics if i get a sinsus infection and i pack some decogestant. Fortunately ive not had to use it. Im not going to let my cll prevent me from doing what i love. I'm also not going to spend my vacation time worrying about what i could catch. Go have a good time!
No sea cruises after treatment. You will not get travel insurance. Treatment raises the cost of travel insurance dramatically. During treatment stay within your country, after treatment research medical travel costs. It is a minefield.
Me in the UK. A stay in USA for a week £700 during treatment and £500 after. So going to Sri Lanka later this year. Fully comp. travel insurance £150 and that is a single trip.
Planes have not caused me health problems. Travel has not caused me problems in the past. Must be the compulsory G and T or 2 on the plane.
What insurance company did you use for Sri Lanka
Researching on the Internet there were 2 companies that gave adequate quotes. World First and Staysure. The initial quote the Internet screen gives is low even after screening but after a phone call it rises. You do need to talk to them because they must be fully aware, so that there are no problems with any future claim.
Both were about the same price but Staysure seemed to ask the right questions. I'm not hiding my blood disease to get cheap travel insurance. Not a risk to take.
My free bank travel insurance would not cover me.
Staysure seem to act like a broker.
What about the risk of not having live vaccines?
Now then. I was a traveller to many developing countries before I was diagnosed with CLL. Therefore I had lots of jabs previously and even more when diagnosed.
You can't have live vaccines, so, you must before you book see if the jabs you've had are enough.
Booking a foreign holiday is no longer easy because you have to research vaccination requirements and insurance quotes before you book.
I do not know the risk of not having live vaccines for a holiday. I would not take a risk of not being fully inoculated and therefore I can't go to some countries.
Very sensible advice. Shall give live vaccine countries a miss.
Yellow Fever is quite limiting because many countries require an international vaccination certificate with your travel documents. Dengue also preclude CLL, live vaccines
I wear a mask when flying. And don't touch anything in the pocket of the seat. If I remember wipes I do the arm rests etc. wash hands etc. so far so good.
I do the same. I wear a mask and do not remove it until I am off the plane. I wipe down the tray, which carries the most germs, the seat belt, the arm rests, the pocket, the back of the seat in front of me, and the headrest. I do not turn on the air, since that circulates germs.
Hi, I know what you mean. I Iive in the UK and am flying long haul to the Caribbean next week and not looking forward to 11 hours in a plane.
I have had both the flu and pneumonia vaccines and I travel like a mobile Pharmacist with the thought that if I take a med I won't need it!
Luckily I am still in a good place with CLL, on W and W 6 monthly blood tests and asymptomatic. My aim is to get all the travelling done and visit places on my " bucket list" while I can and trust that all will be well. The other issue is also energy levels while away so will have to pace myself.
I wish you all the very best and hope that CLL will not clip your wings. 🌺
I know I am very much at risk of chest infections but I think planes are cleaner modes of travel than a bus or a train; both of the latter have a constantly changing number of passengers including some who may be well aware that they have some germs but just don't care.
Modern trains and buses do not have opening windows so the air can only change at stops. So very similar to a plane.
I used to travel at least monthly by plane and took no special precautions other than wearing a scarf and gloves in winter which do not make me stand out particularly in the airport, but act as a barrier to germs acquired by contact. I will leave a queue if I notice a cougher and rejoin it much later on. I have taken a mask with me but never found the need to use it, probably because I noticed no real coughers on the plane.
I use the same strategy for shopping in flu season and keep my vaccines up to date.
Everything involves risks but some we can mitigate as the outcome is then worth the reduced risk.
Hi, I found that I couldn't get reasonably priced insurance for a year after chemo. However, I now have no problem (we get travel insurance with our bank account) as long as I am not receiving treatment.
We travel extensively - mainly cruising. Last year we clocked up in excess of 70,000 miles! When flying I regularly use oil of eucalyptus on a tissue and Tea Tree Essential oil around my nose to help prevent infections. On a flight to Australia I was lucky enough to sit next to a young man with a very severe cold. I survived unscathed - he arrived feeling better thanks to liberal use of my products!
I also carry hand sanitiser with me and again use it regularly, before touching anything - even the seat. I am a magnet for any infection that is around, but have found that these simple steps have enabled us to carry on with our travels. We're packing in as many miles as possible at the moment as I'm looking at further treatment in the near future, which will curtail our wanderlust!
Hope this helps.
My husband has throat cancer and cll.Both were diagnosed last July in the same week. He had intensive chemo and radiotherapy for the throat cancer from end Sept and finished first week of Nov 16. The cll is w & w. (He has a scan booked for the beginning of Feb to see if the treatment was successful). We decided to fly to Lanzerote for some winter sun just before Christmas 2016 (for 1 week) as he was recovering nicely and got full travel insurance for a family of 4 inc. all extras for him (and that included his peg feed) for £70 the lot. It was with Boots Insurance and he was able to input all details online for both conditions and the peg feed and said it was very straightforward.
We were pleasantly surprised and reassured by the cost and the fact that he could get full cover. Boots are one of the insurance providers recommended by Macmillan. Hope this helps!!
I travel all the time. I think one has to be careful about the cleanliness and food. I travelled to India 2 years ago and came back quite ill would love to go back but I am weary.
The advice for India is go vegetarian even if in 5 star hotels. Take peppermint oil capsules after meals because of the rich oils and bottled water, hand sanitizer etc. Fantastic country.
The best yes, I know , but I am gluten free and there is also gluten in the forks as they say. I did travel in the more remote areas
You definately want a Prevnar13 pneumonia vaccine, if you have never had it. The other pneumovax23 is hopefully up to date. Might get an HiB as well
I highly recomend a read of the CDC Yellowbook for Immunocompromised Travelers
It is not CLL specific but you can consider us to be in the same group as HIV patients...
All innoculations should be updated, but NO LIVE VACCINES..like Yellow fever
wwwnc.cdc.gov/travel/yellow...
And have doctors letters and all medications with you as well as a Fly Home plan in the even you need to return home in an emergency.
~chris
Treated with FCR July-Dec 2012. No non-UK travel in that time. Consultant OKed travel by Feb 2013. Since then done multiple European countries, Japan and New Zealand. After seeing a program on aeroplane airflow design I was much more at ease with travel although the queues in the airports (at gates and security) always worry me. I think there are much worse places than aeroplanes, such as the London Underground.
I had flu, pneumonia and HepB jabs as part of my preps.
I discussed taking anti-biotics with my GP and she was not keen on the idea as she said making sure you take the best for your situation and all places I was going I could get to a hospital in a couple hours or so. If I'd been going somewhere way off beaten track she'd have given me something, as she has mountaineering as a hobby(not the things you get in UK) I decided she'd know what she was talking about.
best, rob
I now close the overhead vents on planes and so far, no more upper resp infections. Used to get one 36 hrs after almost every flight with blowers open.
I've also become much bolder in my old age. 
On my flight home from NIH friday, a young man sat next to me, immediately started coughing and admitted he thought he had a cold. Full flight, no where to move, I reached for my mask and found I had a spare. I gave him one and asked if he would mind, if he had to cough or sneeze, if he would us the mask as a handkerchief. Bless his heart, the lovely young man put the mask on and wore it for the whole flight!
Thanks for that I had never thought about the vents blowing down and increasing risks. I just hate such things and turn them off, or redirect them away, wherever they occur. I guess I don't like the drying effect on my skin nor the additional noise they make,
I think masks are finally becoming popular thanks to the Asians not being shy about wearing them. When I do wear one I don`t get much stares anymore. One time when I did not feel well I wore a carbon mask to the supermarket and a woman boldly and loudly said, 'Why are you wearing a mask?" I was tempted to say there was going to be a terrorist threat in the store or to protect myself from you, but I bit my tongue and just said I didn't feel well. She was satisfied and walked away.
Personally I've been wearing a mask when having any medical appointments for at least 4 years now - starting after I got gastro after a haematology appointment, despite being meticulous with hand washing. I haven't become ill after an appointment since.
I think that now it's more likely that I may feel embarrassed than anyone being curious. I gave up going to large social gatherings years ago after contracting long lasting colds and in the last 12 months have been confident enough to attend two concerts, which I thoroughly enjoyed. No-one took the least notice of me with a mask, let alone making any comment.
While masks are definitely most effective when worn by the person who is ill - capturing all the viral particles as they breathe, talk, cough or sneeze, sadly there will always be inconsiderate people that don't even think that by them being in a social setting, they could very well kill others by spreading their (to them) mild illness.
Neil
since I have chemical sensitivity I have worn double carbon masks on occasion when I know people will wear heavy perfume or laundry products loaded with dangerous chemicals. I had planned to go to a dinner and I would have wore a mask most of the time I had chills off and on all day from ibrutinib dose. so I didn`t go but my husband brought food back for me so I didn`t lose out.
I traveled to Hawaii and Costa Rica last year with no problems. Did take lots of sunblock and bought UV protective clothing. I had a pneumonia shot when diagnosed 4 years ago and told it would be effective for 6 years. But want to know, has anyone had the shingles shot?If I remember reading something on the internet that CLL patients should not get it. Am I right? I no longer get the flu vaccine as I started to have reactions that got worse each year. Tend to have respiratory issues in the fall when the corn and soybeans are harvested and there is so much mold and mildew in the air. I am allergic to those two things amount others.
Hello. I see that no one has replied so I will tell you no on the shingles shot. It is a live vaccine and we cannot have it. When you see your oncologist or specialist have them give you a list of vaccines we cannot have. Hope this help. Carole
Hello everyone. I want to thank you all for the advice you have given me.
You are all so caring that I feel like I have a whole bunch of new friends.
Thank you
grandmajoanie
You do have a whole new bunch of friends! I echo everything said before and wang to add my well wishes for lots of fun on your travels x
First trip post diagnosis was to Prague this past July. Dr gave me an antibiotic to take with me to use if I got an infection. I almost messed things up by cutting a big gash in my thumb the night before we left. ER doctor put in stitches, gave me a tetanus shot and a script for an antibiotic to use in case it got infected. Told her I had one at home, but she gave me a different one that would work better against the different type of infection.
I took Clorox wipes out of the container (container holds liquid - a no-no) and put in plastic bags, one for each flight leg. Before each leg, I went to desk in gate area and explained my condition and asked for early boarding privilege. This allows you not to have to stand in the herds of people lining up to board and be sneezed and coughed on. Also gives you time to wipe down the whole area around your seat, including the overhead bin release handles before you use them. Be sure to wipe the seat belt buckle and the tv screen, seat back adjustment etc as well as the normal things like tray tables and arm rests. I carry my own small pillow and a lap quilt so I do not have to use the ones on the plane. I keep masks available and also disposable rubber gloves in my purse. When time allows, we try to remain on board and deplane last, again to keep out of the herds of people crowding together to get off the plane.
Our next planned trip is in April to Normandy. Hope it is as uneventful (health wise) as the last one.
Good luck and don't let CLL keep you from enjoying all that you want!
BeckyL. USA
GM,
Like so many other replies, I wipe everything down, turn off the air, wear a scarf or mask. One other precaution I take is dabbing a small amount of neosporin on a cotton swab and coating the inside of each nostril with it. Many germs are airborne, we can't stop them all, but can certainly try our best.
Safe travels,
Kim
USA
Before I traveled to Costa Rica I asked my doctor for a scrip for Prednisone in case I ended up with insects bites. Glad I had it along as the second last day I did have bites on my ankle that looked nasty so was glad to have Prednisone with me.
CLL with CNS involvement 
Watch & wait with CLL
Living with CLL
