| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Deb- I tried the Ace bandage trick, but I think I'm a little too thick around the middle and it just bunched up. I also tried using a belly band for women post-hysterectomy, and it too got too bunched up (although I loved wearing one after my own hysterectomy!). Or maybe I'm just sitting down too much  -Margaret
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
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Margaret...sorry the Ace didn't work so well. Maybe it has to do with the position of the tube..Bill's was fairly high on his stomach. Also, he had me to wrap it for him...daily ritual for me to clean around the hole and then stretch the ace around him after his shower. I think getting it stretched properly helped keep it from bunching but that is hard to do by yourself.
Anyway, we were so happy to find something that worked and didn't irritate like that awful tape did (we tried cloth and surgical tape...both were troublesome.)
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Margaret . . .my RO's nurse pulled the tape off me the first day I came back from having the tube put in and gave me several elastic bands - sort of like spandex. I could step in or pull over my head to put on after showering and it held tube in place all day. If you can't find something similar, let me know and I will call her and find out exactly what she used. She gave me several and they were washable - lasted me the 12 weeks I had the peg.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I would be interested in finding those "elastic bands" since the ace bandage doesn't always seem to work for me (often ends up bunched up). I've had my PEG for three years now, but there are still good new tricks to learn, so keep the ideas coming!
Generally, I just tuck the PEG into my waistband and that seems to work, though. I have had it "peek out" at least once that I'm aware of. I was guest-teaching someone else's class and didn't realize until it was over. I'm sure it distracted those students pretty thoroughly....
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Forgot to say, Kathleen, If you want to talk about the "might be a permanent situation" thing, I'm in the same boat (though I don't know if it's for the same reasons). I am still hoping to get off it, but I can see that it might not happen, depsite all my efforts.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Well, I finally gave in and started using the tube.  Between my burnt up tongue, the sore throat and the disgusting taste in my mouth, I simply couldn't take in the calories or hydration I needed so this weekend I started tube feedings. I also took the Roxicet for the first time and some serious Robitussen dosing. I've got 20 rads behind me now, 15 left to go, and three chemo infusions. I still have some good energy left and went for a nice walk in the evening cool (after a cat nap!) and that felt great. I hope to keep up the walking and not lose any more wieght.
Last edited by margaret_in_ma; 07-28-2008 09:45 PM. Reason: three infusions left, not two
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
| | | | | 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 |
Margaret:
You are past the 1/2 way point. Its good that you still are able to take walks and have energy.
Be very careful with weight loss and not getting your hydration and nutrition. Its good that you are using the tube. I ended up being admitted twice to the hospital for dehydration. I had a hard time with the tube feedings and finally had to get a pump to do them overnight. For calories you should be shooting for 3000 per day and minimum 48 oz of water preferably more. If your hydration and nutrition drops you will start feeling pretty bad.
Hang in there it will be over 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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hi Christine -
My nutritionist told me 2000 to 2200 calories a day - or 6 cans of Jevity, which I've done for a couple of days. I have lost some weight, but I think now that I've 'crossed over' to the tube, I should be okay. I'm also supplementing the Jevity with some fruit juices and I'm thinking about adding some thinned down yogurt for the cultures, I think my digestion would like that. I'm sure that the calories can be adjusted if I keep losing. As far as hydration, I've been doing pretty well with that so far, and trying to have at least a few sips of water to keep my swallow muscles intact.
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
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Margaret, the thinned yogurt is a good idea or you can use kefir which has a lot of the same cultures that are good for digestion. Most of the time I was entirely dependent on the tube for my nutrition, I always added a couple of glasses of fruit/veggie juices each day. Actually I usually had one veggie a day like v8 or carrot juice or this green veggie blend of stuff they sell at the local helth food store and one of fruit. It may have just been a placebo effect but I swear I felt better having those than just the jevity by itself. Of course, if you are having nausea from other things such as chemo, the jiuces may be hard in terms of that.
Glad you have managed to cross over to the tube-you'll cross back soon, don't worry.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2008 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2008 Posts: 43 | you can get super acidophilus which is the yogut bateria and add it to your liquid i also add some glutimine powder
Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma
April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008
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