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Joined: Jan 2009
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Just my two cents. My husband's doctors all suggested him getting a PEG. John was convinced he would not need it but got it just in case. smile Even with it in he lost 30 lbs. He was very stubborn in the beginning and wouldn't use it. Once he started using it his weight stablized. He continued to swallow water every day so he wouldn't loose the ability.

John had so much mucus that he was on two different types of anti-nausea meds. The mucus would make him gag and throw up and there is no way he could have gotten enough nutrition and hydration in by mouth.

PEG = another tool to help get you through treatments. You don't want them to have to stop treatments once you get started to place a PEG. It will take you a few days to recover from the procedure.

Last edited by slim; 02-05-2014 11:48 AM.

Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: Mar 2014
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I hope you decided on the PEG. My husband is the affected person - his doctor pretty much insisted he get one with his radiation. Hubby insisted he wouldn't be using it, but did pretty much right away. It made a HUGE difference.

I called my husband from a bus in Bermuda last spring. The guy sitting next to me heard me mention the doctor in Boston -- said his brother had also seen him. I asked him how his brother was doing - unfortunately he died - partly from complications due to his refusal to get the PEG.

My husband did focus on proper eating ASAP and was able to have it removed in almost record time.


Husband is patient. Diag 5/10/12 - Stage IVB.
Squamous cell carcinoma left tonsil/base of tongue.
5/30/12 starts 3 cycles of cisplatin, 5fu, taxol.
Wkly carboplatin + 35 radiation done 10/2/2012.
6/25/13 -Robotic surgery part of base of tongue removed; radical neck dissection.
12 of 15 margins were disease positive.
Took Capsol-T (green tea extract) until 11/12/13
HER2 biomarker present - 40MG Gilotref start 11/12/13; restarted at 20mg 1/20/14.
Tired, cranky, otherwise hungry, healthy.
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Posts: 2,671
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My son and I found OCF only after he had started Rad Tx. At that time, in a group consult with his cancer team, they asked him if he wanted a PEG and my son, my daughter and a nurse friend and I all answered together, "No!". (What did we know !?) At the time, my idea of tube feeding seemed like forever thing. The benefits were never explained nor that it could have been only temporary in order to help lessen the effects of radiation. Thinking back to the struggle Paul had and how I could see him suffer through treatment, I think a Peg could have helped him. He lost a lot of weight - I don't know how much because after losing 20 lbs, he was very secretive about how much he weighed. All I know is that his jeans threatened to fall on the ground every time he got up to walk into the Rad room for Tx.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Posts: 31
It seems like the usual reaction to the first mention of a PEG tube is "No." That was my reaction a month ago too. But my primary care physician, my ENT, the head and neck surgeon, hematology oncologist, and radiation oncologist were all adamant that it is better to have it and not need it than to need it and not have it. The final opinion came from my sister - a registered nurse for over 25 years. She said "absolutely get it." I finally realized that I am not seeing all these doctors and asking them to help me save my life just so I can ignore their advice. So I swallowed my natural inclination toward stubbornness and got the PEG. I am not sorry I did so, although I'm only about a third through my rads and chemo and I only use it for hydration so far.

Listen to your doctors (and your sister if she is a nurse). You may never have gone through this before, and you don't like the idea of the thing, but they have helped patients through it hundreds of times. They really do know what they are talking about.


2/2014 SCC T4aN2bM0 HPV+ Tonsil/BOT
3/3/2014 PEG and port
3/10/2014 Chemoradiation therapy begins 260 mg Cisplatin x3, 2.12 Gy rads x33
4/23/2014 Final Cisplatin infusion
4/25/2014 Final radiation treatment
7/17/2014 PET scan. Lymph nodes clear. Primary tumor reduced both size and SUV (borderline hypermetabolic) so it's inconclusive.
8/2/2014 PEG tube removed.
11/24/2014 Saw MO, RO, ENT, and Head & Neck Surg. over past 10 days - all agree no recurrence but enhanced surveillance will continue.
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Well, just for balance. I am 100% in the don't get it unless/until you need it. I read far too many complications by getting one. Of course one needs to weigh the benefit against the downside.


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
Joined: Dec 2013
Posts: 78
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Posts: 78
Thank you so much everyone for candid opinions based on your experiences.


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
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