| | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | I had a peg tube installed week 6. It only took three hours, then I went right to rads. However it took 5 days to get. Thoses were 5 rough days. Eating felt like swollowing razor blades. I got it because I could not get the liquids or cal and my weight was dropping. That made the bad situation worse. I had it for 7 weeks. I struggled with feeding all the way through.
Its a tough call. It will make getting food in easier but if it is used to early and you stop swallowing its hard to get it back. Learning how to deal with it when your not a wreak might be a least worst option. However everybodies different. I would like to see some stats on how many got it but did not need it.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Apr 2014 Posts: 5 Member | | OP Member
Joined: Apr 2014 Posts: 5 | Made it thru without any problems. G-tube and mediport in place. I guess this means we are as ready as we can be for the start of chem and radiation. Nurse comes tomorrow to "teach" us how to use and care for it. Will aslo bring supplies including a pump I know cause I asked after Christine suggested we might need one and was delighted to find out the doc had already ordered one.
He's in pretty good shape except he is starving and I am only allowed to give clear liquids until tomorrow, doc was very specific so I am following orders. I tell you this guy burns the calories like crazy and he is truly hungry. Hope we can make up for it tomorrow.
He plans on going to work in the morning and I am beginning to believe it myself :-) He really began to bounce back once he'd been home for an hour or so. Amazing!
Thanks for all the information and support!
Spouse
Throat Cancer, BOT, stage IVa
Therapy begins 4/14,
Therapy plan:
rad 33 & cisplatin x 3
| | | | | Joined: Apr 2014 Posts: 5 Member | | OP Member
Joined: Apr 2014 Posts: 5 | Made it thru without any problems. G-tube and mediport in place. I guess this means we are as ready as we can be for the start of chem and radiation. Nurse comes tomorrow to "teach" us how to use and care for it. Will aslo bring supplies including a pump I know cause I asked after Christine suggested we might need one and was delighted to find out the doc had already ordered one.
He's in pretty good shape except he is starving and I am only allowed to give clear liquids until tomorrow, doc was very specific so I am following orders. I tell you this guy burns the calories like crazy and he is truly hungry. Hope we can make up for it tomorrow.
He plans on going to work in the morning and I am beginning to believe it myself :-) He really began to bounce back once he'd been home for an hour or so. Amazing!
Thanks for all the information and support!
Spouse
Throat Cancer, BOT, stage IVa
Therapy begins 4/14,
Therapy plan:
rad 33 & cisplatin x 3
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote] I would like to see some stats on how many got it but did not need it. [/quote]I'd like to see stats on how many got one and had swallow issues?
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Although Kris had a PEG placed before his chemo/rads, he was told that he must continue to swallow.
So while he did use the PEG towards the last weeks of treatment he also continued to swallow. A poached egg every morning and night as well as some Ensure. Our SLT and RO were emphatic that he swallow as much as possible every day.
The PEG was there simply to ensure that he did not lose too much weight. Some ensure went down it every day, some was swallowed.
Really it just augmented his own intake. We were very grateful for it.
Kris still has the 2nd PEG that was inserted during his salvage surgery 2 years ago .He barely used that one either. Nothing has been down that one for the last 23 months. Kris sees it as his lucky omen I think. He thinks that if he has it removed it will all go to cactus again. Sometimes I think it won't be until he is at the magic 5 year mark before he agrees to have it removed. I just change it myself every 3 months. No big deal.
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!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | [quote=donfoo][quote] I would like to see some stats on how many got it but did not need it. [/quote]I'd like to see stats on how many got one and had swallow issues? [/quote]
Don, I believe it is 2 out of 10 who have swallowing issues. It may have nothing to do with not practicing the swallowing after the tube was fitted, in John's case, the scarring from the radiation closed his esophagus.
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.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Don,
Most that have treatment for HNC have swallow issues with or without the tube. The rate which those that do get a peg tube, who will be dependent on it long term is 10%, depending on study, and many other factors are involved. The average time otherwise is 21 weeks to 7 months, dependng on study, and seems those that have it pre-treatment, as opposed to reactively, may be more long term dependent.
Seems this is a more recent concern with newer treatment options, and just in my time, 2009, it was recommended peg tubes be placed. I also remember about that time a big uproar with Medicare/Medicaid about the high incident of unecessary peg tube placements in nursing facilities, and the need to reduce that. I don't know if that crack down had any effect in the medical community all around.
The Peg Wars continue lol.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | I had radiation to the left side of my head (tongue) and radiation to both sides of my neck.
I had a peg, didn't use it, had it removed 2 weeks after treatment. No real swallowing issues. (nothing that a drink of water can't wash down.)
hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | don't bait me - peg war - I'll pass... but you are right. I was looking to gather up some ammo. lol
i hate them things!
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 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | I don't like them either but for some people they are life savers - 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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