| Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | Tim is flying cross country, three planes, several hours and will need to "eat" along the way. Does anyone have any suggestions or tips for dealing with the TSA when bringing a liquid diet along for the ride. He's on Jevity through the tube, can't swallow at all, and will need at least six cans with him on the flight.
Thanks, Susan | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I just get a note from our Dr explaining that Kris needs to take cans of Liquid Ensure with him on the flight. This is a medical supplement. I have never had any issues. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Going thru TSA can be a real pain! Most agents are nice and will understand but once in a while there always is one who has to go above and beyond. I always tell them I have a feeding tube prior to going thru the body scanner or any pat downs. I would suggest having a doctors note saying specifically what he needs to carry for medical reasons. Allow some extra time as the agents will have to test the cans individually. I would pack the formula carefully in double ziplock baggies in his checked suitcase and only carry on what he needs for the time he is traveling. If theres time, the medical supply company can even ship him a case of his formula to the location of where he will be staying to help avoid hauling all those cans. Have a great trip  ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I even took lotion with me after my bad burns. Have the pharmacist print labels and put one on each can. It gets you through security, even my toothpaste.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | Thanks for the replies. Christine, when you say they check all of the cans, do you mean they open each one? I've printed the TSA rules, a TSA notification card and am getting a letter from his doctor. Tim waited until the last minute (no surprise  ) so he's going to check the rest of the food. American Airlines may let the bag fly free if it only contains medically required formula. He's leaving from a small regional airport where the airline and TSA reps tend to be nice; they never know who's friends with their mom on Facebook! Susan | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | They will ask you if you can open them. Tell them NO. Then they will swab each can and put the test swabs into a machine that tests for chemicals. When you reach the area where you put your items in the bins to get xrayed, tell the TSA agent that your husband has cans of medically necessary items liquids and a feeding tube. Just dont forget to say the formula cans are medically necessary. Those 2 words go a long way with TSA. Before going to the airport, try to pack all the formula and liquids he will carry-on board in one small bag within another larger bag of his other carry-on items. This will make it much easier to pull out the one bag and place it in a seperate bin. Dont forget to take along a couple bottles of water to flush to tube. Buying water in the airport is very expensive and its always cold not room temperature like what most patients use for their tubes. Since I travel frequently, I actually carry a doctors note allowing me to take water right thru the screening area. Sometimes those lines can be a very long wait. I cant wait an hour or more for a sip of water when my mouth and throat become so dry I can barely whisper. Ive only had to pull out the note twice when the medically necessary phrase wasnt good enough. To me, I find this a bit ridiculous when the agents can clearly see I have health issues when Im missing half of my lower jaw. Dont forget to pack any of the feeding accessories right with the formula. I suggest taking a hand towel to help in case of a spill. Planes can get bumpy and accidents can easily happen during a feeding. The small hand towel can also be used to drape over the syringe during the feeding process so your husband doesnt have an audience when he tries to do a feeding. It sounds to me like you have this all under control, Susan. Smaller airports tend to be easier to get thru. You're absolutely right, the power of social media! Safe travels ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Wow, I never imagined that having a feeding tube would make it so difficult. We haven't travelled anywhere since John's diagnosis, mainly because he can't get travel insurance. I have thought about going to somewhere nearby but I just couldn't face lugging all the formula around (he used to take 6 boxes a day).
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | Follow-up: It helped flying in and out of smaller airports. Arrived early. Asked at the American Airlines counter about checking the bag for free and it wasn't a problem. At the counter, they said Tim could even have an extra carry on so long as it was medical stuff. It took a long time to make it through security. Every can was checked for explosives and every surface and item in the carry on was carefully checked. His pat-down on the way back should have been preceded with dinner and a movie ;-). But all the TSA were polite and professional. Tim had a note from a doctor, the blue card you can print from the TSA site stating that his jaw is metal and he's on a feeding tube.
Thanks to everyone for the advice!
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks for posting a follow up! Im glad you were so well prepared and got thru it without much trouble. I always arrive extra early too. I already know they will check every single item I bring so I am ready. I didnt know about being able to have an extra carry on for things like this. Thanks for passing this info along  ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I didn't notice this post until today, but the TSA has an informative web page, including for medical conditions, that may be helpful for future reference. http://www.tsa.gov/travel/special-procedures
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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