| Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | 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 | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | 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. OCF member/supporter
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | 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.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | 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. OCF member/supporter
| | | | Joined: May 2009 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 113 | 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" | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | 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 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | 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 | 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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