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#50101 09-18-2006 11:14 AM
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The article in the LA Times regarding difficulties in flying for oral cancer survivors came out today and quotes Brian Hill. Coincidentally, yesterday was the firs time that I have flown since the new liquids ban and flew out here to Brian's home turf in Southern Ca. TSA dumped my water but then re-filled it for me at a water fountain inside the secured area. I emptied it once again and had the flight attendant immediately fill it for me, which went very smoothly. Although the letter that I had from my oncologist at MDACC stated that I needed water and Boost, they did not allow the water, but a supervisor did allow my two bottles of Boost to pass.
All in all it was not too much of a hassle. Hopefully, the article and Brian's efforts will bring about some reasonable changes for us. The whole thing is so dumb.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#50102 09-18-2006 11:30 AM
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The article has been posted in the Oral Cancer in the News section of the main OCF site.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#50103 09-18-2006 02:12 PM
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OCF does many little things to try and change the oral cancer situation in the US, occasionally someone notices one of them. We are still trying to get a variance from TSA or some kind of prescreening pass that people that have special needs can obtain. Some of this seems like small stuff to someone in the fight with the disease, but it is all part of the picture. This article was made possible by a poster here on the board that works at the Washington DC office of the LA Times... and we owe her thanks for being involved, Leslie B.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#50104 09-18-2006 02:22 PM
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Hi all,

I recently travelled from Sydney, Australia to Vanuatu and had no problems with carrying my 750ml water bottle, (my 'best friend'!) anywhere. I also was prepared with a letter from my doc as regards condition/ medications, etc. The only thing confiscated was a tube of travel clothes wash, which I had purchased at the domestic airport, before transferring to the international terminal! I protested of course, and stated that it should not be sold if you can't take it on a plane. Good news, went to the affiliated shop at the international terminal and got a refund wink

My husband was checked for bomb residue or whatever they do with the scanner, but not me. I was wearing a neck brace and what if I had stuff inside it? A bit silly me thinks...

Cheers!

Tizz


End of Radiation - the "Ides of March" 2004 :-)
#50105 09-22-2006 02:39 PM
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We were also contacted by Ricardo (the reporter for the LA Times) -- he read my post that the screeners in Australia took Barry's water, Oral balance gel and would NOT let him take his Boost aboard (he always carries one on long flights in case he needs, well, a "boost") Luckily Barry's not dependent on either a nutritional formula or the artifical saliva (he finds xylitol gum works well enough) but there are plenty of OC patients out there who are. It was a 15-hour flight to LA, can you imagine trying to do that if you depended on a PEG or were on a all-liquid diet?

The reporter opined that TSA may be running afoul of the Americans with Disabilities Act by preventing medically needed materials. I was amused that the TSA specfically allows "personal lubricants" (usually a euphemism for K-Y Jelly and the like ) but not artifical salivas. Unless one plans to emulate a scene in the recent movie, "Snakes on a Plane" I cannot fathom why one would need a "personal lubricant" on a flight wink

Anyway we are flying to Engand for Barry's mum's 100th birthday bash early next month and I plan to call TSA to check on what is and is not (currently) allowed. Their list appears to allow liquids (less than 100 ml.) but no gels of any size -- so Oral Balance liquid should be OK. They allow juice etc. for medical needs but no more than 5 oz., rather a small amount if you need to actually get some nutrition en route!

There needs to be some common sense applied, before someone has a health emergency from lack of a needed item.

Gail Mac


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#50106 09-22-2006 02:41 PM
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Barry's Mom is going to be 100 yrs old ?? WOW!! Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#50107 09-23-2006 03:38 AM
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Yes, Barry's mum will be 100 on October 14, she still lives alone and goes into town on the bus regularly. She does have someone come twice a week to clean and take her grocery shopping (this is arranged by Social Services in the UK). She is still very sharp mentally, but is getting more vulnerable physically so Barry and his brothers are trying to convince her to move in with one of them. So far, she is resisting.

She is the only person I have ever met who clearly recalls the beginning of World war ONE - also she lived through the Blitz in London, and worked on wiring (after the war) of one of the world's first computers which she said filled a large room.

A true Cockney, born within the sound of Bow Bells in London in 1906!

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!

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