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#166002 06-04-2013 09:01 PM
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donfoo Offline OP
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I just completed the 7 week daily radiation treatment concurrent with 7 weekly carboplatin chemo infusions. With a lot of time spent watching and managing symptoms, I am feeling really pretty good so far but also want to heed the repeated advice that the next month is not going to be much of a pleasure cruise in any means.

My mantra was hydration, nutrition, and pain management and focus all my energy on dealing with side effects that fall into these three categories. I was able the side effects well enough to avoid having to get a PEG and hope to keep control such that eating and drinking will continue to be self sustainable.

What are the most common side effects that linger from the treatment phase like mucositis and some new ones that might appear new after crossing into the post-tx period?


thanks
don


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
donfoo #166004 06-04-2013 09:53 PM
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Congrats on finishing your treatments, Don!!!

Keep up the good nutrition and hydration for at least the next year to help your body to recover. Its really important to becoming healthy again. Im sure that by your pushing yourself to take in enough water and calories it has helped get you thru everything easier. Great job with avoiding the dreaded peg tube! Now just keep eating and drinking!

The next 2 or 3 weeks will still be difficult. Rads keep working even though you have finished. But after that you should slowly begin to have some better days and begin to feel a little more like your old self.

You probably have some mouth sores. Keep rinsing your mouth with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. If it burns omit or cut back on the salt. If you dont already have it you can ask your doc for magic mouthwash to help numb your mouth so you can eat easier.

Most of us got a thick ropey phlegm for the first 3 or 4 weeks after finishing rads. Its hard to cough it all out so some would get suctioned out at the doctors or got a prescription for a portable suction machine. The thick gunk will soon be replaced by dry mouth. Thats will continue for a very long time while you recover. Some people never get back their full saliva and will take pilocarpine. It takes a few weeks for it to work and the side effects of it are sweating which doesnt always work out so well in the summer. It didnt work for me (since girls dont sweat LOL).

Rest, you have been thru the war and your body is worn out and needs to rest. Its ok to do very light exercising but be careful not to overdo it right now.

Good luck!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
donfoo #166011 06-05-2013 04:22 AM
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Congrats and let's hope the next 2 weeks or so go without incident. I made it all the way to my 2nd week post Tx before I had to get a nasal tube inserted but I wasn't as pleasant sounding as you at the end of my 7 weeks of chemo/rad. I also had the 3 Big Bag Method of Cis which didn't help in the side effects dept.


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.
donfoo #166016 06-05-2013 04:41 AM
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Congratulations, Don! That was a tough treatment you did. I'm sure you mentioned somewhere along the line about your oral care in regards to the teeth by using various methods like brushing, flossing, fluoride tray, prescription fluoride, avoiding sugars, acids. From the radiation, lack of saliva, the teeth are prone to demineralization or caries. I heard of dental treatment to remineralize them, but never did it myself. I need most, if not all, of my teeth taken out now from rads in 2011, and have to do HBO, again. Good luck.


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






donfoo #166026 06-05-2013 06:24 AM
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Congrats Foo!

Now starts the post treatment fun. I had the mucous (the thick ropey stuff and yuck in the throat and sinuses) from about the 5th week of treatment until about two weeks post treatment. Puffs w/lotion were good friends of mine during that time.

Dry mouth was and still is an issue. It was a little worse just post treatment but has begun to improve slightly 6 weeks post treatment.

Fatigue is still my biggest challenge and issues with sleeping compound that. I started taking a Benedryl before bed and that has helped a bit although I'm still up several times a night for bathroom breaks and dry mouth.

Keep up the good work with the side effects symptoms and continue to hydrate and eat as you've been doing and you'll get through this with flying colors as you did the treatment!

"T"



57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
donfoo #166043 06-05-2013 08:55 AM
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"OCF Canuck"
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Hey everyone here has given you good advice so I'll just say KUDOs on getting through it now take it easy and try to heal. And carry a spit bucket! wink


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

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