| Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 Posts: 33 | 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 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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | 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 | 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!
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!! ChristineSCC 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 | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | 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 | | | | Joined: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 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
| | | | Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 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 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
| | | | Joined: Mar 2014 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2014 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. | | | | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2016 Posts: 75 Likes: 2 | 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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