| | Joined: Apr 2011 Posts: 9 Member | OP  Member
Joined: Apr 2011 Posts: 9 | Hi,
I have had oral cancer (MEC--low grade) since 1997, but the impact on my life was not too debilitating until this year when I had a glossectomy and laryngectomy. I am currently in Chemo (taxol and carbo-plat) to try and knock the cancer back a bit, since I have mets in lungs and throat, so fatigue is an issue. I am also in palliative care, so I know my time is limited, but I want to make the best use of what I have and I was thinking it would be nice to travel a bit with my husband. Is this crazy? I would love any tips or suggestions about travelling with a PEG, (I can drink liquids but that is about it), and also about coping with how I look (Scarring and a lot of swelling in my face.) Appreciate any advice. Thanks,
Judy
1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Judy:
Goodness, how I admire your spirit. There are quite a few members on the Forum who have feeding tubes and I'm sure they will chime in when they see your post. Christine, one of our administrators, travels all over quite frequently representing the OCF. She has a feeding tube and can give you all sort of tips, whether traveling by airplane, car, or whatever. Like I said before, I admire your determination to spend quality time traveling with your husband. I wish you only the best and thank you for an eye opener, as I have after-radiation/chemo side effects that keep me "grounded," when I should try harder.
Julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I don't have much to add, just to get clearance from your doctor (s). Ask about flying, due to lung involvement, which I'm not familiar with. Do you have medical coverage for out of state, just in case, know where proper care is along your route, with address, telephone, carry extra supplies, dry protein shake mix, water, first aid kit, list of medicines, medicines in the original containers, extra prescriptions for refills, a note from your doctor about medical conditions, peg, etc. Notify accommodations, airlines, transportation, restaurants in advance for any special needs, who should be more than apply to accommodate you. See TSA on-line for further travel info. I haven't traveled in years, so I'm out of the loop with all the new restrictions with flying. Have fun.
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | You area trooper. I say go for it. Live your life the way you want to and don't let this take anything from you, make it fight for everything it gets. Christine travels a lot. She could give you advice on traveling with a tube. I think you will do fine as long as you take it slow, and make it a low key vacation. Go somewhere where you can sight see etc... but at your leisure. best of luck and happy travels.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | just reiterating what Paul said about coverage. Just make double you have all your cancer related coverage in place if traveling away from home, sure would be a bummer to be out of state and find you gots no insurance coverage.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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