| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Becky,
My surgeon showed me a trick that worked terrifically well for me - she wrapped a piece of fabric tape around the end of the tube, leaving a largish tab. She then stuck a safety pin through the tab which I used to pin the tube to my bra or to my shirt when I wasn't wearing a bra, for example my pajama top.
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: May 2008 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2008 Posts: 43 | the stretchy netting is the best cant buy it anywwhere but the radiation techs and nurses at hopital give me lenghts of it cut it at least 12 inch lenghts or it roll up it is really comfortable. It holds up well in the washer and dryer gets a little gray looking but still workss great.
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
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | ask the nurses where you get care (where you got the tube). They gave me a special belt thing it hooked into and made it easy and they also gave me a script for a special one i could get and insurance would cover. There are other ways of mickey mousing it to work as well - but I like having things specially made for what I am dealing with, so i am not having to fiddle with stuff LOL ... but these helped me a lot - hope it works for you... the tape makes the skin sore after awhile.
btw: i too got an infection and had to take strong meds for it ... it always had a bit of drainage I had to deal with, which made it where I liked using gauze around it - but it wasn't bad and they said it was quite normal ... so if it continues a bit even after infection is gone, don't be alarmed.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Yeah, the drainage is normal and the gauze pads with the little slits work well to contain the "gunk." Bill never had an infection but I had to help him clean around the tube button next to the hole each day and put a fresh pad around it before wrapping with the ace...the button kept the pad in place. Didn't take long and kept things clean and healthy.
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: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Becky,
I too used the Ace bandage wrap around method after many problems with skin irritation from tape. That seemed to end up working better than anything else I tried.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi, I thought I would post with an update. Richard had the peg tube put in this afternoon and the Dr said everything went fine. He's very sore right now as the pain meds are wearing off. The nurse indicated that he might be sore for a few days, then should be fine.
Tomorrow we have appts with the peg tube nurse, showing us how to use it. After that appt we go to the chemo class for info about the treatments. Radiation begins next Monday along with the first chemo session. Everything has been coordinated quite well. The hardest part of this whole ordeal so far has been dealing with SSA to start getting benefits, but that is finally settled.
We are so ready to begin the treatments and get through this as best we can. If anyone has any feedback about questions to ask or info for us at this point in time please post. Thanks for all your help...Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Like many injuries, the second day after the installation will feel the worst (just had my second day; this morning it felt like the 'mule kick', sore and stiff, but this afternoon I'm not even noticing it except when I cough).
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Geri, I had 3 Cis's 2+ years ago but now the trend is to administer it once a week in smaller, less side effect, doses so I would ask about that for sure. Not sure I asked you before but has his slides been tested for HPV?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi, I did ask the MO and one of the chemo nurses about having chemo weekly and they both said that it depends on your individual treatment plan and the amount of radiation. I'm thinking that the 3x schedule is probably their standard treatment for Richard's diagnosis. The RO also said that is what they do. I didn't pursue it and we have been very happy with the quality of care.
Today was the "peg tube tutorial" and the chemo class. I must say that both of us felt lucky to have a positive prognosis compared to the others in the class. We could tell that the other patients were dealing with more devastating outlooks. It's seems crazy to be thankful with this diagnosis, but at least the doctors are optimistic about getting all of Richard's cancer. There are no guarantees about the future, but we have reason to be hopeful at this point in time.
Richard's peg tub was very tight and they loosened it slightly so it wouldn't pull so much. He's still sore, but should be better in a few days. The peg nurse also said that it was best to not use the gauze except for cleaning. She said it was better exposed to the air. That's probably her personal choice.
Well we start everything on Monday, so I plan to pack some yogurt, crackers, and a small amount of oatmeal for lunch. Yum! Please post any info you all can think of. Thanks, Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | 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 | Geri:
Have your husband eat much and as best he can now. Anything he likes and as much as he can. Once treatments start his mouth will change, things wont taste the same and eating becomes difficult. Dont be concerned about weight gain right now. Just make sure he eats everything he likes and craves before eating becomes more of a chore.
Everybody is different and goes thru this in their own way. Im one of the ones who struggled the whole time with eating, its been 1 1/2 yrs since I ate a real meal or even just a hamburger or slice of pizza. Thats why I tell everybody ready to start treatment to eat like crazy.
Best of luck on Monday.
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  | | |
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