#94643 04-29-2009 09:16 PM | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | 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. OCF member/supporter
| | | | Joined: Apr 2009 Posts: 4 Member | Member Joined: Apr 2009 Posts: 4 | 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 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 | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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
| | | | 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 | 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.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | 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 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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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
| | | | Joined: Oct 2008 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2008 Posts: 37 | 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 | | |
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