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#193024 09-15-2016 10:39 AM
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I have 2 doctors recommending 2 differnt options.
Oncologist says get the feeding tube, radiologist says
no tube needed. Going to have 7 weeks of radiation along with chemo everyother week. Any suggestions?


LPV, 62 years old, non smoker,
7/26/16 CT scan,
8/4/16 Biopsy base of the tongue findings inconclusive.
8/9/16 PET/CT scan
8/18/16 Biopsy base of tongue, confirms Invasive SCC Stage 4
HPV-16
9/18/16, 6,1" approx 187/lbs.
9/28/16 loading dose Cetuximab.


LPV #193026 09-15-2016 11:36 AM
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The decision to get a tube or try to tough it out is a difficult one to decide. Often patients feel like everything is out of their control and when they actually have a choice their first reaction is NO!. Some patients have issues right away while others are luckier and sail right thru their treatments without many side effects. Some patients will prepare themselves with every tool they can and get the feeding tube so they are ready if they need it. Other patients feel they can tough it out no matter what and will drink their calories if it comes down to it.

Ive had a feeding tube and found it to be helpful during some very difficult days. I am one who thinks its better to have one and not need it than to get part way thru and struggle so much where they feel horrible and they have to wait another week or more to get their tube placed. Others have done it without the tube but ended up getting a more temporary nasal tube. This type can be inserted in a few seconds right in the doctors office and removed just as easily.

At least half the patients who go thru rads w/ chemo will struggle by week 4. Rads accumulates so as time goes on the rads build up and the patient feels worse and worse if they are not taking in enough. Even when the radiation treatments stop that doesnt mean the worst is over, the rads keep right on working. Starting now, you should take in at least 2500 calories and 48-64 oz of water every single day. This needs to continue until at least the first year after rads ends. If you are the kind of person who can motivate yourself and push yourself to eat and drink no matter what then you may be ok without a tube. During rads, many of us have had very painful mouth sores, a sore throat and lose our sense of taste and ability to swallow making eating next to impossible.

I suggest reading posts about the feeding tube decision before you make your decision. Pay attention to those who seem to go thru it without many side effects, the common link is they usually do not have chemo and are the ones who do the best with their intake. Use the search function up towards the top right of any page.


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
LPV #193028 09-15-2016 03:06 PM
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Can you find out from your RO how many grays of radiation you are getting? The more grays it is, the more chances you will have swallowing problems. My husband got 70 grays over 7 weeks and that was the lifetime maximum. He needed his feeding tube from about four weeks into radiation. Others can tough it out and these are likely people with high pain tolerance. The other question to consider is how much do you weigh right now and can you afford to lose a large amount of weight during treatment. Start thinking along these lines and, like ChristineB said, read through the posts on feeding tubes.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
LPV #193029 09-16-2016 05:08 AM
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I think it is important to understand that no matter how high a pain tolerance one might have, depending on amount of rad, area targeted, dosage & type of chemo, toughing it out might not work. It is not necessarily a patient failure of will.

There is a case to be made for having PEG in place or waiting to see how severely swallowing is effected. Christine outlined many of the considerations.

Our RO & MO insisted on PEG placement prior to tx. so we didn't face this issue. My husband lost zero pounds during tx., mindful of exercising muscles with sips of liquid. I believe this speeded up his overall recovery. The other advantage was getting use to the PEG and a formula gradually before it was essential.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
LPV #193036 09-17-2016 08:11 PM
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Kris has had the PEG inserted on 2 occasions. Our Team would not start treatment without this in place. Kris did manage to swallow ok for the first 3 weeks of radiation and chemo. His oral intake then tailed off dramatically. He was just nauseated and vomited a lot from the thick secretions that developed in the throat. Although he continued to swallow, he could not maintain his weight and he needed to use the PEG. Kris lost around 40 pounds through treatment, despite using the PEG with Ensure for nutrition.
Although Kris had a high pain tolerance and did not use any pain killers through treatment ( very unusual ) it was the thick ropey saliva and secretions that were his undoing, causing excess nausea and vomiting. He also lost all interest in food and eating. The PEG really was a life saver.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
LPV #193045 09-18-2016 04:27 PM
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I totally agree with you. It was mandatory to have the tube in place before I started chemo and radiation. It was a life saver for me and even using the tube I have lost over 50 pounds. Was 138 when I started and down to 86 pounds now. Good thing I am only 5 foot tall. My mouth is always so dry that I can't get anything even a touch chunky to go down. Even with the tube I really struggle on a daily basis to get enough 2Cal and ensure down along with as much water as I can take. 8 ounces at a time is all I can take before I feel like I have been to an "all you can eat" buffet and I ate it all. This is a daily battle and I am sure I would have not made it if I didn't have the feeding tube. I have spent a lot of time researching home made liquids I can get down the tube without clogging it up but alas am still using the the formula. Again, I believe, as was stated above it boils down to how much weight you can stand to lose from the start.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

LPV #193049 09-19-2016 08:17 PM
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Ideally, you shouldn't lose any weight during treatment. My body needed and used every calorie I put in it during radiation and for about two years after. If I had to do it all again, I'd still use a feeding tube. Made treatment so much more tolerable.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
LPV #193063 09-20-2016 05:40 PM
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I went thru Induction Chemo, followed by 7 weeks of Rads with weekly Chemo. I did this without a feeding tube but would recommend that most have one. It took all my Marine Corps discipline to make it thru. I drank 3000 cals per day plus ate 4-6 eggs per day for 12 weeks, but it gave me some control over the BEAST. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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I have never done this entered a blog/opinion but for anyone that has oral cancer throat cancer...a port for the chemo and a feeding tube same time...my husband did the port but nixed feeding tube after 3 weeks of vomiting he had to undergo surgery again for the feeding tube...
A port is to avoid ones veins from collapsing from having the chemo put through them...the artery is stronger and safer but this I pick up from sitting in the chemo room with my husband. So much easier quicker cleaner.


PamelaBlue
LPV #193075 09-22-2016 08:53 AM
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Been through radiation treatments twice, once with a tube and once without.

Lots of great input above with good observations from both sides of the question.

Personally, I would recommend the tube for the duration of your treatments just for the ease of calorie intake. It is a pain, but I think in the long term, the ability to maintain consistent caloric intake outweighs the hassle of dealing with the tube.

As for the thick ropey saliva - ask for a suction machine. its a great way to clear your mouth and reduce the gag factor



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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