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#94643 04-29-2009 09:16 PM
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I was wondering if ALL OC patients have eating/swallowing problems.

I will be starting TomoTherapy next week for 7 weeks. I have a PEG, but hoping to eat normally as long as possible. Then, try to keep on swallowing liguids so everything continues to work properly.

Just wondering what to expect.
Thanks
Sandy S.


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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SandySt. #94645 04-29-2009 09:40 PM
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Hi Sandy,
I am new to this, but I just completed 5 years after IMRT radiation and surgery for OC. I did not have to have a feeding tube but it got close. Everyday after radiation I would go to Foster Freeze and eat a big vanilla cone and in the last few weeks sipped canned liquide meals. I am not familiar w/Tomotherpy, but I had difficutly swallowing for several years after. Nothing that I couldn't deal with, just had to make sure I took small bites or I would choke, taste buds came back in about 6 months and saliva improved over the next 2 years and everything is pretty much normal - Good luck and one day at a time you should put this behind you - Dave


2002 diagnosed w/Squamous Cell carcinoma in the lymph, lumpectomy, right neck dissection and IMRT radiation. 5 year cancer free
5+YearsDave #94652 04-30-2009 03:40 AM
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Sandy, wishing you the best with your treatments next week. Eat everything you want now before you start. I just posted a list of easy foods that could help you later.

Dave, congrats on your 5 years!


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
ChristineB #94655 04-30-2009 04:16 AM
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Yep, congrats Dave. Sandy do as Christine says. It's a bumpy road but good shock absorbers make it smoother. You sond like a fighter already so keep that spirit and use it. It sure helps to be positive and prepared.


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
EzJim #94662 04-30-2009 05:48 AM
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Sandy,

As I'm sure you can imagine our body functions in perfect harmony until something starts to mess with it so you can also imagine that having your mouth and throat subjected to radiation can only be a bad thing. You also have heard that everyone can be affected differently so how much "bad" the radiation does to you will just depend upon you.

I didn't have the PEG which forced me to continue swallowing all throughout Tx and perhaps that helped me as I never had any post Tx swallowing problems. I still am not 100% recovered in the saliva dept and may never be so that affects my swallowing as I need to wash things down faster now than before but compared to many I was lucky.

I did many things to keep my throat functioning like controlled yawning where I tried to "fire" my muscles a lot; I would take sips of water and try to gargle 3 to 4 times a day; I took many hot showers where I was freer to gargle and besides they just made me feel good and of course I swallowed many, many times each day just to stay alive.

When I was a newbie and having just completed Tx I often touted NOT GETTING THE PEG as I compared my ability to swallow to those that did have the PEG and had swallowing problems and the wars started. Since then I realize that the PEG is not the sole determent whether someone ends up with or without swallowing problems although I still caution people getting the PEG to continue to use their swallowing muscles as much as possible but obviously the most important aspect of Tx is to survive and for many, if not most of us, the PEG can facilitate that.

Good luck to you.


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.
davidcpa #94665 04-30-2009 06:08 AM
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Sandy

I believe the simple answer to your question is YES. If there have been OC patients who had zero eating or swallowing issues, I have not seen their posts on this or any forum. Eating/swallowing and radiation appears to be an oxymoronic phrase. Like David posted, I attributed my good fortune in being able to swallow to foregoing the PEG and being forced to swallow six cans a day of Ensure Plus or die the last month of TX I lasted 4 weeks into radiation still eating solid foods. Now that I have been forced to have a PEG, I am looking forward to just having it as a backup someday.
The important thing is to keep swallowing no matter what. Everything else will come back in time. One year exactly after TX, I had the very best Thanksgiving dinner of my life because I savored each bite and did not take one swallow of food for granted. My taste never came back fully.
Finally I would not have made it through without Seltzer Water. It cut thru the mucous, it cleared out the Ensure film, it soothed the oozing mouth sores without irrating them and I imagined the carbonation as little scrubbing bubbles whisking away the dead skin cells. Best wishes and stay strong.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #94666 04-30-2009 06:17 AM
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I have to contradict a little of what Charm said above where he said "The important thing is to keep swallowing no matter what. Everything else will come back in time."

After talking to several people I made mad because I was telling them that me not having the PEG MADE THE DIFFERENCE and then realizing that no matter what some people did during Tx they ended up with lifelong swallowing problems, I decided how wrong I was in putting it all on behaviors we can control because sometimes it doesn't matter what we do, to much damage is done.


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.
davidcpa #94670 04-30-2009 08:45 AM
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I never had the peg, never have had much trouble swalowing and I have to think that it's because I forced myself to swallow meds as soon as I was out of surgery. Just like the little engine that could. He kept saying I know I can, I know , I kn ow I can, and he did it. He pulled the RR cars up the hill with no problems.. Positive thinking can make one do impossible things sometime.


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
EzJim #94671 04-30-2009 08:47 AM
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Yes I was told that I couldn't do it by the nurse and the Dr but I did it . THey just smiled and said keep that attitude throughout treatments.


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
SandySt. #95805 05-20-2009 05:29 PM
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Sandy,

Your treatment sounds great. Where did you go?

Mike

tongue ca, t2n2b, 2x surg 12/08, 04/09, ND, start chemorads next wk, 30X 2Gy + weekly cisplatin

chemeng #95818 05-20-2009 08:52 PM
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Sandy,

I had horrible swallowing issues but all are a distant memory...Well, the very bad ones. I still have some problems here and there but nothing like the ones I had going through treatment. I was drinking 60 plus ounces of liquid a day and that really helped. Although, it got to a point where I couldn't get anything down and it put me in the hospital for 9 days due to severe dehydration.

Good Luck and take it one day at a time...and I believe it's a good thing that you have a PEG....I did not have one...and I came real close to getting one.

Stay strong.

Last edited by Ray1971; 05-20-2009 08:53 PM.

7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
chemeng #95819 05-20-2009 09:15 PM
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Mike:
I'm being treated by INOVA Hopsital System (Fairfax Hopsital) in Norther Va.
Originally the doctor's wanted only to do Cisplatin and radiation for 5days/7weeks. But I found a medical study on line which gave good results for Induction Therapy using Cisplatin, 5-FU, and Textera. I asked my doctor's to do the more aggressive Induction Therapy. It turned out to be the best decision I've made. The chemo therapy reduced my cancer a great deal even before I started radiation. The doctor's are very positive about the prognosis.

Induction Therapy is typically used for more involved cancer than mine as I did not have any lymph node involvement, but I asked for it anyway as I was already a Stage 3.

There is a huge (800+) study that just completed in 07-08 called TAX 324 which give the results of the chemo regimen.

Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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SandySt. #95821 05-20-2009 09:28 PM
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Sandy
can you just clear something up for me?You have just written that you had no lymph node involvment,but your signature line says that you do .

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #95822 05-20-2009 09:35 PM
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The nodes were too small to be considered. less an 8mm and SUV very, very slight. So no surgery, all signs disappeared after chemo. They are radiating a lymph node on my left side just because that's were my cancer is located. Just as a precaution.

Also with a PET there's a chance of a false positive which I believe was really the case.

Last edited by SandySt.; 05-20-2009 09:38 PM.

Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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chemeng #96002 05-24-2009 09:52 AM
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I will be starting radiation in 2-3 weeks as soon as my neck dissection I just had 4 days ago heals! They said I would have problems swallowing after my partial glossectomy, they said it would be hard to eat and swallow after my neck dissection and now they are saying I will most likely have a PEG! Well! I swallowed and drank a TON after my glossectomy, I ate dinner the night of my neck dissection and have continued eating everything I want 4 days after.....Does it hurt? Hell yea! Is it hard??? Hell yea! Is it going to kill you? NO!!! I had a salad lastnight and every bite I took when it went down my throat made me cringe but you just keep doing it! I feel like I have lived with the wost tonsilitis for the past 2 months! I dont know if Im going to know what to do with myself when it doesnt hurt anymore to eat, swallow or drink!!! So I will not be getting the PEG! I am sure I wont be eating pizza 4 weeks in but I will unless it just absolutely will not go down my throat be eating and drinking myself! I am 30, just married, just bought a house and am very pissed off that I have to deal with this so I have more fight in me to beat this then it can possibly have to beat me! Keep the attitude, keep the faith and dont let the small stuff get to you!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
JIM BEERS #96004 05-24-2009 12:01 PM
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Jim,

The PEG is not a bad thing. Knowing now what I went through during my txs, hindsight is 20/20, I would have gotten the PEG. It would have kept me out of the ER and the hospital for severe dehydration. Who knows maybe I wouldn't be getting my gall bladder out next month if I was able to maintain my weight during the tx's...I don't know...But, what I do know is that a PEG can be a very good friend. With no PEG I went from 215 to 165 pounds and a 9 day hospital stay. Currently, I am able to maintain my weight anywhere from 167 to 172 pounds...it fluctuates.

Having said that...Keep that attitude strong! You'll be alright.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
JIM BEERS #96027 05-24-2009 04:23 PM
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Jim

I hear you loud and clear. congratulations on being able to swallow after a glossectomy and eat right away. With that track record you may not need a PEG at all. Heck, I made it through the first time with no PEG, no dehydration, 40+ lbs weight loss from 177 but just gritted my teeth and did like you are doing, But you do need to know that you are doing it the hard way my friend. Then again you are half my age and when I was thirty, I thrived on doing things the hard way. The biggest disappointment of the entire cancer journey was not even the cancer coming back, it was failing my barium swallow test and having to get the PEG. It is crazy, and not rational but true. One word of caution, you are unique in your experience and definitely not the norm, so tread lightly here on the board on the PEG topic. It is the best option for almost everyone. But as I said, reading your post really brought back memories - THANKS
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #96084 05-25-2009 04:51 PM
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Jim

After watching the 60 minutes on the potential in 5 years for cancer treatment based on the resveratrol in red wine, I remembered one other argument (albeit unorthodox and most definitely NOT endorsed in any way, shape or form by OCF - purely my personal opinion) in favor of getting a PEG.
Alcohol and tobacco irritate the tissues of the mouth and have been proven causes of oral cancer. The issue of drinking a glass of wine or so after treatment (or even during treatment) is controversial with some doctors saying NEVER and others opining that they have seen no harm in their patients. The beauty of a PEG is that you don't need to worry about which side is right about alcohol, you can just let it trickle right into your stomach. At my age, I like my daily drink and hated the thought of cancer stealing that away from me too.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #96105 05-26-2009 06:07 AM
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Jim,

I didn't get the PEG for the same reason you seem to be going with, i.e., you are just pissed off you have this cancer and a PEG is just one more thing to remind you that you are one sick puppy.

Now I made it thru with that stubborn foolish attitude but believe me the PEG can be another very effective tool in your bag of tricks to fight this cancer. You don't have to use it unless you need it (and there is NO WAY you can know that now) but it will be there JUST IN CASE. BTW, if you don't get it now chance are you won't be able to get it when you need it without disrupting your Tx which is not a good thing.

My advice would be to put your pride aside and get the PEG.


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.
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