| | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Debz - unfortunately, you can't donate any controlled pharmaceuticals, which would include any pain pills or narcotics, valium, etc. Sone organizations will take other types of medication if they are individually wrapped in the original tamper proof packaging....
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | 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 | Debz:
Thats GREAT news about the PEG coming out!!!!! You must be doing excellent. Im a big chicken about my PEG too, so dont feel bad. I also have a port that can be removed at any time. I told my doctor leave the port in til its time for the PEG to come out. That way I will be knocked out and wont feel it. After going thru so much, I just cant face it being pulled out. When my PEG site was bothering me and started getting red, I would put antibiotic ointment around the site and cover it with gauze. That may help you to make yours feel better.
About the meds, if they are individually wrapped then ask your oncologist if they have anyone who needs them. Its really a shame to waste expensive medication when others must go without due to the costs. I forget which one, but my chemo nurse told me the one pill I took was a $100 pill. Good thing for insurance.
Congrats again!!!!!
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 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | I had some issues with irritation and redness around the peg too. Naturally, I wanted to keep it as clean as possible and disinfected the heck out of it. (Bad idea) When I finally regained my senses I just scraped off the gunk that accumulated around it and washed it once in a while and the irritation and redness went away.
Christine, the port is also not a big deal but it does take longer to take it out (maybe 15 minutes).
M
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi guys thanks bunches again....
Me2 i never thought about the drugs that way "controlled substance" that would make me a dealer..LOL oh boy
Christine hi there, the patches are in their own little packets all sealed i think they are called fentinol or something like that, good knock out meds, those are the same little pills $100 each they are supposed to stop the nausia but didnt work for me, still i will ask at the clinic i went to maybe they can pass them on. thanks for making me feel better about the peg...hugs...
Markus i think your onto something i wash my peg everyday in the shower and then clean it off with this stuff hubby got for me and its so sore maybe too much washing.
well i just called my mother in law ask if hubby could move back with them...LOL...apprently he was at work (works at the same hospital i had my treatment) and he just happend to bump into the peg Dr (yeah right) of course when she called me i knew he had told on me...so looks like i have to suck it up and get it done.
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Debz,
I was in Houston following Hurricane Katreina when I was due to have my tube out. The ENT I saw there told me she would normally take it out but because it had been put in by a surgeon she was going to send me to a surgeon for the removal. The surgeon pulled and pulled without success. He called the manufacturer of the device - he had pulled a small section out and read the manf info on the tube, just like on the side of a tire! After getting instructions he still could not get it out so he made an appointment for me to see a gastroenterologist. The gastroenterologist gave me a shot, took the tube in his fist, twisted his hand and yanked. Out it popped. much less pain than getting a tooth pulled with novocaine. It was weird get a shot in the belly but it worked. He said that the surgeon just was afraid to pull hard enough.
Don't be afraid. Get the thing out and you'll have more time for other things like eating from real dishes and having coffee in a nice big mug.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | Debz:
Are you scheduled for the PEG removal yet? I was given the ok to have mine removed too. Im having it done along with my port at the same time. I will keep my fingers crossed for you. Please let me know how yours goes.
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: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hey all, well i did it yesterday, have to say though it hurt like hell good news is because my HR was 100 and change they gave me something to try to chill me out (my Dr was laughing my HR was fine untill she walked in the room...LOL) i slept all day on whatever they gave me, but it's all done and feels great to not have that constant pain or tube hanging around.
thank you all for the encouragement.
Tube free Debz
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Sep 2007 Posts: 98 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 98 | Great job Debz! Not having the tube is like a new freedom.
Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
| | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi Tom, thanks, and your right it really is, was the oddest thing this am to have a shower and not have to worry about it.
How are you doing? have you had a follow up Pet scan?, thats next on my list keep putting it off...LOL
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | 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 | Debz:
Congrats on getting rid of the PEG. You were very brave to have it out like that. Do you feel ok now? Are there any stiches?
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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