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Joined: May 2008
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i get this netting from the nurses its like a fishnet tube top
cut about 8 or 10 in lenghts and its real comfortable you curl the tube up under itself so tube doesnt lay flat where it comes out works great and you can wash them


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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Ive had my tube for almost 1 year and never thought of those ideas. Even taped to my stomach, I had it pointed down and gotten several leaky days and many changed clothes. Worse yet was the time it was hanging out when I was grocery shopping. I think it scared a little kid who just stared at me like I was a martian.

Thanks for the ideas.

Margaret and Don, dont give up eating and drinking or at least trying to everyday. Its very important to keep swallowing daily so you wont have such a hard time later with recovery.



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
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Christine, I know! It seems so simple. My skin cannot tolerate adhesive tape for more than a couple of days so I have to tuck or something. Pinning is perfect.

And its my intent to never stop swallowing! But we'll see what the reality is. My team includes a great speech/swallow therapist and I've been trying to be good about doing her exercises. I know they're already helpful.


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
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Margaret:

Thats really very good that you are doing exercises now. It will save you from big problems later. Unfortunately nobody warned me about that and I have big issues now with trismus. Which affects eating and dental work too.

Sounds like you are doing great, keep up the good work.





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
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Margaret

Thanks for the advice. I was hoping to increase my exercise but until this week the PEG hadn't healed up. This has happened so fast -- in less than a month; Neck dissection, Tonsillectomy, PEG and RT!

My RT is at noon, and about an hour later I get tired for about six hours then I seem better. But by then it is night! I was hoping I wouldn't have any significant effects for couple more weeks.

I understand in my case they have to radiate a large field. Maybe that makes a difference. They have told me it will get real bad:(

They gave me ten cases of Nutren and said I could both drink it and pour it down the tube. Also got some sample of Carnation Breakfast Plus (not VHC), Ensure Plus and Boost -- I ask if they have any VHC.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Don -

Even just walking is said to help with fatigue. Its been super hot and humid here lately, so I've been going to stores and walking in air conditioning. The big stores don't seem to mind at all.

Christine,

I learned from reading post-treatment posts here how important it is to keep up with the exercises. I think if I hadn't, I wouldn't fully understand the damage that is being done to my body. Like you, I'm only 45 and hope to have some more years ahead of me - I'd like for them to be good ones!


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
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Hey Guys,

Thought I would throw out to you something that was a great solution for Bill's PEG since he could not tolerate the tape either. We used the nice soft/stretchy 4 inch wide ACE bandage...just wrap it around your torso and use the velcro closure making sure the velcro was all on the bandage and not exposed to the skin. They wash nicely, so keep two or three around. Available in most pharmacies. They breathe as well, so they aren't hot.

If you can find the 6 inch wide..hard to do..that is even better. Steer clear of the ones that are self stick...too rubbery and don't wash well.

Bill would just tuck the tube in and pull it out from under to feed (kind of like breast feeding smile )

Hope this helps,

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
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Note to all of you....

Please keep up on the calories and the water. Do not let the Tx dictate how much you are able to eat or drink. Most of us were told a minimum of 2000 cals and 48 ozs water EVERY DAY NO as in NO EXCEPTIONS. You do this and believe me your Tx will go much better.


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.
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sounds like a lot of you on tube feeding are having different issues...I have been on my PEG since early last Sept and it looks like it might be a permanent situation...I've discovered/experimented with all sorts of things and have come up with a lot good tricks...everything from things about the tube itself, to what I add to my diet in addition to the Nutren...if any of you want to contact me with questions, I might be able to give you some help...always good to share ideas...Kathleen

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Kathleen, either just post them here or start a thread on 'PEG tricks' so it's easy to find in archives.

On my first PEG, I had a neck strap that came with some flash memory that had a quick-disconnect. I rigged that up to the PEG and it kept it pointing up and handy for use. Current PEG is too rigid and points down, but doesn't leak so I haven't done anything special yet.


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.
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