Has anyone been doing much aiplane travel since carry on water was not allowed? I have gotten a note from my Dr for the oralbalance moisturizing gel which works ok but some days it is just not enough. Anyone using anything else? Thanks.

I'm glad you started this topic. To top it off, I heard on the news that planes are not necessarilly carryuing extra bottled water for passengers and the water from their taps often does not meet EPA cleanliness standards. I don't understand why they can't sell bottled, sealed, water near the gates (after you've been through the security) so so many people don't need to be uncomfortable.

Let us know how the note for oral balance gel works. I was told they are fine with prescription meds but don't like over the counter ones that are liquid or gel, even with a doc's note.

I'm planning on just not flying for a while until this gets straightened out(sigh).

Nelie

I just went through this mess as I traveled to Boston to lecture at a conference at Tufts. I had a DEA Rx for water, stating that I should sip it every few minutes as needed, a letter from my docs ( with contact phone numbers if there ws a question) at MD Anderson Cancer Center explaining what xerostomia is and the problems that it can cause if tissues are not kept moist and none of it helped. I had my water taken away at screening. I bought anouther bottle from an inside the airport, inside the after-screening waiting gate store, and even that was taken away from me before I could board. Luckily I was flying my favorite airline JETBLUE, (also and OCF sponsor), and as soon as I sat down the attendant knew to bring me a bottle of water, (arranged on the phone with the agent when I booked the flight) which they replaced as often as I wanted during the flight. On the way out of the plane hatch as they were saying good bye, they handed me another one to get me to the next store where I could buy one. (This is the way airline travel was 20 years ago, when we were not cattle and they cared about us.) But even a controlled substance DEA Rx was not getting me past the screeners no matter how enthusiastic my arguments.... It sucks. My next try is for an Rx for oral balance liquid, and I will squirt it out of the over the counter bottle and into a brown Rx bottle, and have my drugstore type a label for me.

There were some changes announced 9/6/2006 that could help. See http://www.tsa.gov/travelers/airtravel/prohibited/permitted-prohibited-items.shtm
Among other things, the TSA is permitting "Up to 4 oz. of essential non-prescription liquid medications including saline solution, eye care products and KY jelly." I would think this could include the liquid stuff like Oasis spray, but gels could still be prohibitted. I really like Brian's idea of having your friendly pharmacist (we all have one by now, don't we?) repackage an OTC product!

Joyce

You know, I just looked at that list of prohibited items and it's clear they've thought about very specific needs for people with disabilities like diabetes or being wheelchair bound but not at all for people with dysphagia and xerostomia. Right now, if I was on a long plane flight, I couldn't really eat much while I was in the air--because I'm very limited in what I can swallow and it needs to be liquid. And I couldn't take on board biotene mouthwash although maybe I could take the biotene oral balance liquid (which comes in a 1.5 oz bottle), as long as I had a doctor's note and as long as I had a screener who would beleive it was an essential liquid med even though it isn't mentioned under "including" (but that alone would not get me through a plane flight easily). Brian, Is it possible we could get OCF to contact the TSA about these two things (xerostomia and dysphagia) and how people who suffer from them are affected?

I mean, for screeners running across our needs will be much more rare than the diabetics and wheelchair-bound but that seems like it's even more of an argument for them to know what the issues are and to have a specific list of things that should be allowed (like liquid food if one is dysphagic).

I am truly worrying that these new regs will restrict me from travelling where and when I want (and for me that restricts me on issues related to my job as well) and I'm not happy about it!

Nelie

Brian, I would be willing to do some advocacy in this area, Erik's job is dependant on flying around the country, and he is very worried also. Do any of you have any ideas who I could contact with to begin a push for people with dysphagia and xerostomia. I am looking in the OFC site and elsewhere for more information regarding these issues that I could possible relay to them as well. I will be in contact with our radiation doctor too. Any tidbit of who I can contact would be appreciated.
Jennie

Ok guys,
We have a reporter doing a piece for the LA times looking for info about how these new air travel rules are going to impact us H&N cancer patients and is it going to effect our air travel. If you want to be heard the time is now. He wants to be emailed at:
[email protected].

See the other thread under air travel for his post.

Let's not pass up an opprotunity to be heard.

Take care,
Eileen

I very frequently - I've had 6 flights since the 18th of August. I'll be flying at least one roundtrip each week - if not 2-3 each week in September and October. I'll post if I find anything different - however, I do have drymouth issues - but not as severe as most of the people who are wondering what they can do. I can tolerate it okay if I have to. I am just posting what I have found so far and if I find out differently - I'll update this thread.

For those who are interested, here is what I have found so far:

I always have in my purse the following items:
A travel size toothpaste,
A nasal inhaler for allergies - labeled with the rx,
An albuterol inhaler - again labeled with the rx,
chapstick,
lip gloss (yes the prohibited kind),
small bottle of lotion that you get from the hotels.

I always get any drink taken away from me in the secruity line. I've had my bag searched by hand twice (some x-ray operators don't flag it for review and some do). They took the toothpaste away today - but didn't see the lotion or the lipgloss - which were in plain view. They did double check the inhalers - but I've been through the lines multiple times when they don't check inside my purse at all.

I think the busier they are - the less they check - they are just too busy to check everyone. And - I also think it depends on where you depart. I left Miami today - and that is where they took the toothpaste - but missed the lotion and lip gloss.

I think also - that if you are a man - traveling alone - who has any resemblance at all to a different nationality - they are going to search your bag or at least really check it on the x-ray machine. Unfortunate - but it is happening.

My advice to anyone traveling - if it is something that you need - but can survive without for a few hours - pack it in the checked bags. If it is something that you'd like on the plane - but could survive without - and if it is replaceable easily and cheaply - put it in your purse or carryon bag and don't mention it - if they find it they'll throw it out - if they don't - they dont'. If there is something that you can't possibly do without, I'd advise that you get a perscription or a pharmacy label if possible and label everything that you can - you have a better chance of being allowed to keep stuff - but no guarantees unless they change in the near future - but I really don't see that happening.

I know I've been very tempted to hide a water bottle in my carryon after I get through security - b/c in most (but not all) airports and terminals - you can purchase drinks after going through security. (If you are traveling out of a small airport / terminal - make sure to check about this before going through security - as it might be a long time before you get your first drink - when it is served on the plane!)...but I have never tried to sneak a bottle on the plane. I know that others would complain if they saw it - and you'd get the flight attendants all worked up and they might actually take action against you for trying - or it might delay your flight or a number of things.

In all - for me it hasn't been horrible. However, like I stated earlier - my dry mouth is no where as severe a many on this site. I have it due to the lingual salivary glands being removed - leaving me with just the parotids - but I didn't have radiation - so I don't have that damage to deal with.

KY Jelly!!?!?!? Must be for the "mile high" club.

The terrorists have truly won the war...

Gary...somehow I just knew you would have a comment about that... In fact I would have been really dissapointed if you hadn`t!

I understand security concerns but does it strike anyone that this whole topic is prompted by idiocy bordering on lunacy. It seems to me if airlines can collect all kinds of data on us including the ordering of special meals on some flights arrangements for escorts etc there should a uniform system that allows you to pre flight notify the airline of special needs and if necessary have a Doc fax them a Rx for whatever you need so it can be noted right on your boarding pass. If we can purchase prescription drugs over the internet the same verifying system? could be used to confirm a passengers needs.
OH would that constitute customer service?
AAARGHH
Denise

Denise,
I could not agree with you more. We are scheduled to fly to CA from Texas next week and since my treatment I have never flown without a couple of bottles of water and usually a few bottles of Boost in my backpack.(Back when I could not swallow well, I took a thermos of soup on every flight. People currently in that situation are just out of luck I guess.) My wife suggests that I get my RO to give me a letter explaining the situation, but since water and Boost aren't prescribed, I cannot imagine that it would make much difference to some TSA employee.
The whole thing is a big joke as far as I am concerned. About the last thing that I worry about in day to day in life is terrorists.

Danny G.

I'm not a lawyer but doesn't it violate the Americans with Disabilities Act if the only way you can "eat" is to drink something like ensure or soup and they don't either offer you that on the plane or let you bring it on board? If they are offering other people food, they have to give people with a swallowing disability accomodations so they can also be fed, right?

Or are we just out of luck when the ADA comes up against homeland security?

Nelie

Nelie -- That's an interesting question, and I hope you'll send it in an e-mail to Ricardo, the LA Times reporter who is looking into this. His contact information is in Eileen's posting (above), or in a separate thread in this forum. I also hope you'll agree to speak with him, since it's anecdotes like yours -- that you are going to drive seven hours to DC for a conference, rather than fly -- that will bring this issue to life.

(Full disclosure: Ricardo and I work together.)