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#178084 03-09-2014 02:24 PM
Joined: Aug 2013
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I had my peg tube in on friday. It hurts so bad! I feel myself getting frustrated and hating this all already. I don't want to give up. I have only done 4 rads and 1 chemo. So many more to go. I feel like I will not have the strength to make it through. I know I have to for my kids but it is so hard. I hope the pain of the peg goes away soon because I am having a hard time with it. I feel like such a looser. I need my strength back. Sorry to both all of you with such a baby complaint. It just knocked me further down than I had anticipated.


Age 36
Mommy of 4 smile
Diagnosed 8/5-tongue cancer
T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive
Path report all clear margins!
11/5/13- enlarged taste bud and mild Dysplasia
Surgery planned for 11/12
11/12 cancer cells removed
Staged increased to stage 3. T3N1
Chemo and rads started 3/4/14
33 rads and 6 chemo
Peg tube 3/7/14
37 radiation and 8 chemo treatments
Completed treatment 4/25/14
recurrence 12/1/15
surgery for Hemiglossectomy 12/11/15
TheresaC #178087 03-09-2014 03:46 PM
Joined: Jul 2012
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Take one day at a time. I felt like givng up everday for any reaon I can find. You completed one giant step to get proper nutrition, and no surgery is easy, so that's an accomplishment, and tje pain will subside. I tried to sty in a comfortable position, not sure if I had pain meds, probably did. Somewhere, deep down, you will find the strength to survive, and be there for your children. If you have any questions, ask.


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






TheresaC #178088 03-09-2014 03:58 PM
Joined: Mar 2011
Posts: 1,024
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Theresa, I know this is hard. More so as you have small children to care for.
Do you have family who can help with the kids?
If you need pain meds to help with the PEG pain, take them. Though it shouldn't hurt for too many days.
You now need to tell yourself that you can do this, and believe me , YOU CAN. Take it one day at a time and keep breathing. You can do this. Think positively. attitude is everything in this fight. Tell yourself that you are going to both get through this and you are going to survive. You have so much to live for. I truly hope Family will help you through this and with the kids. Above all, be kind to yourself.
Thinking of you,
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!
TheresaC #178191 03-11-2014 05:41 PM
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Posts: 262
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Posts: 262
Theresa, my PEG started hurting two days after surgery. I needed oxy to tolerate the pain it was so awful. It took two more days for the surgery nurse to make it to my room. It turned out the PEG had become too tight. They adjusted it, but it tightened up again a few weeks later -- I think as I became hydrated. Getting it adjusted is simple, painless and easy.

It should not be hurting intensely. Something is wrong with the PEG, not with you! What would you tell one of your children who was going through this, scared, in pain, in shock? Well right now you need to give yourself some mother love, too.

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
TheresaC #178196 03-11-2014 06:52 PM
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Its ok to complain here and get those worries out in the open. We understand! We have all been there at some point and know how difficult treatment can be. We have all had our ups and downs and battles with the pain. Please understand you do not have to ever apologize for your feelings, especially here on the forum where we understand what you are going thru.

When I first had the feeding tube placed I felt like I had been punched in the stomach and then hit by a car and backed over too. It was terrible for about the first few days then I began to feel better. I was kept overnight in the hospital for the pain when I first got the peg. If your tube still hurts as much tomorrow, call and get an emergency appointment with the gastro doc who placed it. It needs to be checked for tightness and to make sure you dont have granulation or another reason for the pain.

Hope you feel better very soon!!!


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
TheresaC #178198 03-11-2014 07:02 PM
Joined: Oct 2011
Posts: 805
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Great advice Lynn.
Being scared is totally ok and completely understandable. I don't think anyone goes through this without those feelings. You can allow yourself some time to grieve and be scared, then put your battle face on and go for it!! We are here to help and to listen and be your cheering squad. Hang in there!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
TheresaC #178275 03-13-2014 12:00 PM
Joined: Nov 2013
Posts: 104
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Posts: 104
Theresa,

My PEG hurt like a SOB for a week or more after the procedure if I recall correctly, it will subside in a couple days. The Doc told me the younger or more fit the person is, the hard this procedure is on them due to thickness of the stomach muscles. Whether he was padding my ego or just trying to make me feel better I don't know.

If its anything like what I went thru, the next little gastro battle you will have was the stomach trying to pass the small balloon on the business end of the PEG as food. I eventually started using it as my "need another formula" alarm.

I did find it very useful from the middle of week 3 all the way to about 5 weeks post treatment when I could in no way eat. Tonsillectomy followed by rads is not any ones idea of fun.

BONUS: when the opiates and other drugs start causing severe constipation. None of the curative medicine tastes good that fixes that, so straight into the PEG without having to hold my nose.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
TheresaC #178278 03-13-2014 04:23 PM
Joined: Aug 2013
Posts: 33
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Posts: 33
Thank you all so much. The tube still hurts but not as bad. I am having the doctor take a look at it because I think it might be infected. I have now completed 2 chemo treatments and 9 rads. I am feeling well and still eating like crazy. I came down with thrush and some sores are starting as well as dry mouth but I'll take it. I am still so scared of what is to come. I know it will get bad...I am just trying as hard as I can to keep going and pushing myself to stay well. Thank goodness for this group. I feel so much better when I come here. Thank you all again for your kindness. I really appreciate it!

Theresa


Age 36
Mommy of 4 smile
Diagnosed 8/5-tongue cancer
T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive
Path report all clear margins!
11/5/13- enlarged taste bud and mild Dysplasia
Surgery planned for 11/12
11/12 cancer cells removed
Staged increased to stage 3. T3N1
Chemo and rads started 3/4/14
33 rads and 6 chemo
Peg tube 3/7/14
37 radiation and 8 chemo treatments
Completed treatment 4/25/14
recurrence 12/1/15
surgery for Hemiglossectomy 12/11/15
TheresaC #178497 03-19-2014 01:38 PM
Joined: Mar 2014
Posts: 31
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Posts: 31
Don't feel poorly about yourself. You have taken a vital step in ensuring the stability oh everybody's life around you. You should be very proud of yourself for doing so. I admire you for your courage and determination. Sure it hurts but it will get better - and so will you because you are brave and strong and willing to make the hard choices and trade today's comfort for tomorrow's better life. Well done!

Last edited by Liam Skye; 03-19-2014 01:39 PM.

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.
TheresaC #178508 03-19-2014 06:51 PM
Joined: Apr 2016
Posts: 75
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Posts: 75
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Theresa, My peg hurt so bad and gastro sent me home without any pain meds, I ended up in the ER with pain meds and they checked it to see that I was put in correctly. Long haul but keep up with your positive attitude it will help


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction

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