| Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | On our last trip to Puerto Vallarta, before cancer, I bought a bottle of water at the duty free shop and they still wouldn't let me bring it on the plane. That could be a real problem now.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Dec 2008 Posts: 20 Member | Member Joined: Dec 2008 Posts: 20 | I have a little bottle cover like the ones to keep beer cold, or as we say in the south a "coooozie" that I keep on my water bottle, Dasani, or whatever I have that day. That way I can tell it's mine from others at work. I was wondering if OCF could put the logo on some, for us to order. That would make for good conversation when people ask, help tell our story: why we carry water everywhere, and keeps it cold if you like it cold ( I like mine room temp) and raise funds also! I know at the OCF walk in Nashville, everyone commented on the bottle cover. I tried putting one of the stickers on my cover but it wouldn't stay. Thanks, Kat
59 yr old female Rad Tech T2N0M0 lt tonsil IMRT x 35, no surg, no chemo. Last treatment 11/18/08. Dealing with L'Hermittes sign presently. Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That is a very good idea Kathi.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | We don't have the money to do this right now. But we do have some bullet proof you can put them in the dishwasher on your car windows stickers that you can have for free if you just contact Megan at OCF and ask for them. Please stick them on anything that you think will raise awareness. I have them on my lap top hard case, my rear window of my car, my plastic Starbucks coffee mug that I take to get refilled every day etc. The batch that we have right now are our logo, the batch that is being printed right now as we are running out of these, also has the web address around them.
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. | | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | David, Your story is even crazier than mine. Most courtrooms provide a cup of water for witnesses, if necessary, not to mention a box of tissue for the weepy witnesses.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I had one Baliff that wouldn't allow me to bring my bottle in but had no problem with me walking in and out to drink. Those guys are on serious steroids. lol Man I just wish I had thought of the ADA thing. Owning a restaurant I have had many encounters with ADA related issues and I just never thought that I now could invoke those rules to my benefit. See lawyers ARE good for something!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I find the large waterbottles cumbersome when traveling, shopping etc. and since the small pint bottles of water are only available in bulk, I have purchased a .5 liter collapsable water bag from a sportsgood store. I refill it from a water fountain or with sink water after going through the line. The same is available on line from platy.com. I see that they also have a neoprene cover with a 1 liter bottle. I think I will order one and just not fill it all the way until I am ready to get on the plane. I will stick on one of the bullet proof OCF stickers.
I also carry a collapsable water cup in a small zip lock. These are available where travel accessories are sold. This is good for rinsing out your mouth and for taking medicine (there is a small compartment in the lid for pills.
Has anyone had experience getting past TSA with tubes of Biotene toothpaste? They don't make travel size. I can see this being a problem because I also use sodium floride toothpaste an hour before eating, the Bioteen after breakfast and other times in the day and MI paste before bedtime. The other 2 come in less than 3 oz tubes and are RX. Do they really beleive that anyone needs 3 different toothpastes??
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I just save a tube when it is almost finished, rolled up neatly and clearly less than 2 oz. A technical violation, but so far not a problem.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Have you all noticed how thin the new bottles are?? When you try to remove the lid, damn thing squeezes together and you get a shower and wet clothes .It's even hard to stand one up without it buckling.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | They are probably child proof packaging. Which tends to mean that I can not open it but a 6 year old child can.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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