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AWW #168177 07-19-2013 03:50 PM
Joined: Oct 2012
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Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
It would help if you could help your sister-in-law put in a routine and make up charts for meds, feeds, etc. I am the only caregiver and even for me, some days just merged into others and I could not remember if I had given him his meds this morning or was it yesterday. Have your sister in law drive your brother around the neighborhood or to the park to sit on a park bench for five, ten minutes each day -- he may be too weak to walk but being out of the house helps lift the spirit. Talk to your brother about taking it one day at a time and not to get ahead of himself -- he will eventually come to realize that it is a new normal and, as for recurrences, don't try to cross that bridge until you get to it. You want him to live in the moment and enjoy every 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.
AWW #169116 08-11-2013 12:36 PM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
PaulB said it all: "Some side effects can last up to two years, more, but are minor inconveniences compared to cancer"

Not much I could add to that.

But here's something I can add, there's a new product that I find works better than any Biotene product for dealing with Dry mouth.

It's a spray that comes in a very small bottle and available only either on-line, or from a dentist. (I dunno why, that's just the way it is.)

it's called CariFree CTx2 spray. It contains Xylitol and also provides pH neutralization of your mouth. The later is important in fighting cavities, and radiation does something that really exacerbates the potential for cavities.

I buy boxes of this from my dentist for $20/4 ea 12/ml bottles and keep one in my car (in the ashtray) and another at my bedside for those times I wake up to go to the bathroom. Each bottle is good for about 200 sprays, and they recommend 2-3 sprays each usage.

Ask your dentist about this,

Here's another tip for those of us who suffer from dry mouth; chew gum that is sweetened with Xylitol. Also, IceBreakers mints are sweetened with xylitol and do the same, but all xylitol mints (there are others) have the draw back that they only work while they are still in your mouth. Very, very short term.

The gum,however, seems to work as long as you have it in your mouth (and are not engaged in any activity that is really strenuous.)

I use Trident "Tropical twist." I buy it in 3-paks at the grocery store. Overall, it works better than any of the products above (IMHO), but the drawback for me is that I often end up biting my cheek. Then I have to fall back on a water bottle or one of the products above.

Good luck!

Last edited by Bart; 08-11-2013 12:37 PM. Reason: speelink

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Bart #169119 08-11-2013 03:41 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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Once I was on a bus, and had no place to put my dry mouth lozenge, has Xylitol, I got tired of, so I put the lozenges in my water bottle, which turned it blue, but it helped my dry mouth for a few hours while taking periodic sips. Something just seems wrong with drinking blue minty water lol, so I never did it again, but it worked.


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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