| Joined: Apr 2013 Posts: 21 Member | Member Joined: Apr 2013 Posts: 21 | I was encouraged not to have the tube by my team. They said that patients without the tube tended to do better post treatment. If I had needed one I was told it would probably be a 2 day wait. My worst time was 2 to 3 weeks post treatment and was mostly due to pain on the side of my tongue.
T1 N2b M0 IVa HPV+ right tonsil 58 non smoker Noticed enlarged lymph node right side 2-2013 CT scan 2-18-2013, FNA 2-21-2013 Neg, Excised 1 node and bio tonsil SCC 3-19-2013. MD Anderson 4-1-2013 8 teeth removed 4-12-2013 Start treat 4-29-2013 66 GY IMRT Comp treat 6-7-2013 8-15-2013 NED | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | I resisted getting one until week 6. By then I was a mess. Lost 25 lbs, pain was horrible, and I was metally lost. Drinking was nearly impossible. I managed only a sip once or twice a day. For the next 4 weeks the peg was a life line. However, Getting one requires surgery and it was one tough, long, day. I was 152 lbs before treatment. I was down to 132 when I got the PEG. It is easier to get it before you need it. Even with the peg feeding is not easy. I threw up everyday, Ouch. However getting water in was OK. My advive is get it and don't use it. Then use it as much as you can, then stop using it as soon as you can, the get it out as soon as you can. I can tell you that after 5 weeks, I was sick of those littly cans.
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: Jun 2013 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Richard got his PEG before his treatment started. He did not start using it till midway through the treatment. He was able to keep up on the recommended nutrition (3000 cal) and proper hydration (64 oz plus). He just finished up treatment and is still tube dependent, but planning to wean off as soon as he can. He lost about 20 pounds, but the Oncologist says that now he is at an ideal weight for his height, 214 lbs at 6'3". I agree with the above, better to have it and not use it, than to have to fix things, when you are in the midst of treatment and unable to swallow and in a lot of pain. Barbara (CG)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | 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 | Depends on the persons current heath status, weight, and possible need due to surgery, radiation or chemoradiation compromising eating, swelling ability. I had on put in without my knowledge or signed for it while hospitalized, and in ICU, but anyway, it was necessary, and lost 110lbs just from chemo, so one never knows what will happen. Anyway, one was planned to be place before chemoradiation, but unplanned came first. I chose to get one for my recurrence, as suggested, being my Heath, weight, and eating ability was compromised, and still have it 3.9 years later, but do not use now, but did during my last treatmnt in October through December, and holding on just in case.
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 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Shelby,
My team thought I could make it without a PEG but I hit the wall hard and was unable to eat the last couple of weeks of treatment and I lost a lot of weight. I rang the bell and two hours later was having PEG put in. Other than water, I took nothing by mouth for the next 4 weeks of recovery and relied on the PEG. As much as I didn't want one, I'm glad I had it. I started eating a month post Tx and didn't use it at all since. It was removed 8-6.
In retrospect I probably should have had one put in sooner but I fought it tooth and nail until I had no choice. Even if she never uses it, it's a good insurance policy.
Positive thoughts and prayers
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | I chose not to have a PEG. Wouldn't change a thing.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 92 | I had PEG placed prior to treatment and it was a life saver. I had no desire to eat a big part of treatment and no ability to for about a month. I don't know how people get through treatment without it. I was unable to drink anything but water for about 4 weeks and that was extremely painful. With the peg I just poured my water and nutrients in . My treatment ended the end of May and I had my PEG removed yesterday, it was a very happy day for me.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers 3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13 rad end 5-29-13
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there being in Vancouver you are likely being treated at a cancer hospital. Chances are way will insist one be put in. She can resist this but being that she s 60 It may be better for her to have one to help when things get painful. It really depends on her pain tolerance, and how difficult you think it will be to get her to eat. She will have to have nutrition. I had one placed as my hospital insisted, but I couldn't use it so I muddled though without and was okay but I forced myself to take my nutrition even when things were bad. If she can't do that then a peg may be a good idea particularly if she's small to average sized. Regardless of a peg or not she need to remember to swallow all the time. best of luck.
Last edited by Cheryld; 08-17-2013 05:47 AM.
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: Aug 2013 Posts: 20 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Aug 2013 Posts: 20 | Thanks for all the responses. She is having the Peg put in on Monday. After chemo and 5 treatments of radiation she already is starting to have side affects. Right now it's really bad stomach problems so she had to get a prescription from the doctor, not sure what it was. She tried taking all sorts of antacids but nothing was working. I heard that the first few days after the peg surgery is tough....
supporting my sister age 60, SCC tongue, Stage 1-2, peg in 8/26/13, 30 rads w/ 3x chemo begin 8/12/13, end 9/30/13 | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | It takes a week to recover from the PEG surgery. Yes the first few days are the worst with daily improvements from day 3 to day 7. This again is where hydration and food are very important. I did not feel like eating the week of recovery and lost 8 pounds. Keep that in mind. Also time is needed to get used to carrying the tube around. My wife and I without knowing better taped the tube to my stomach to keep it stable. A week later a nurse gave me a stick on catheterization stabilizer to hold it in place which was great. Make sure to ask for some. You need to change out once a week and change placement to protect the skin underneath. Also tracheotomy drainage gauze helps to protect the area around the tube until seepage stops.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | |
Forums23 Topics18,209 Posts197,040 Members13,222 | Most Online614 Jul 29th, 2024 | | | |