#41661 08-27-2007 09:33 AM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | OP  "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Just returned from hospital; Buzz got PEG, has had TWO oxocodone and is writhing in pain....I did a search and found a gazillion posts about PEGS...don't have time to read all of them at this moment...IS THIS LEVEL OF PAIN NORMAL???
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#41662 08-27-2007 09:42 AM | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | No, Lois
I don't think this is normal but we have only experienced one so we are not the experts. Bill took some liquid tylenol w/ codeine (15cc) right before he was released and did not need anything till the next day so something is not quite right. Bill was sore but not writhing in pain. No one should be hurting that bad no matter what...I would call and get help!
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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#41663 08-27-2007 10:36 AM | Joined: Aug 2007 Posts: 41 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 41 | Hi,
Call someone i got a peg and no pain untill thay took it out and then only for a minute or two.
paul
paulie
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#41664 08-27-2007 11:00 AM | Joined: Apr 2006 Posts: 5 Member | | Member
Joined: Apr 2006 Posts: 5 | This is absolutely not normal. Call your doctor immediately! The same thing happened to my husband, he had a tear that had to be surgically repaired. Good luck! | | |
#41665 08-27-2007 11:55 AM | Joined: Mar 2007 Posts: 179 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2007 Posts: 179 | not normal , I would call the dr. LJ
CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
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#41666 08-27-2007 12:26 PM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Doesn't sound normal. When I woke up from the sleep and had my new pull string I don't recall feeling anything at all. The only pain came when it was removed several weeks later.
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.
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#41667 08-27-2007 02:04 PM | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | I had to go back to the hospital after mine was done - from horrible pain. We thought it was infected. It turned out the tube was simply too tight - the little plastic/rubber flap that 'anchors' it outside the stomach to keep it from pulling 'in' to the stomach. If it's locked down too tight, it causes internal irritation and hurts horribly.
A simple adjustment to loosen it and I was in almost immediate relief.
I have heard of other cases of this as well.
-Steve J
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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#41668 08-27-2007 02:51 PM | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Same thing that Steve described happened to me too. Except that the "dude" who put it in told me that it is just in my head.....
Well it was simply to tight, once it was loosened (a few days later!) everything was fine.
However, there are also other possibilities so talk to your physician.
Markus
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.
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#41669 08-27-2007 03:17 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | THANKS to all of you for your posts! It's now 10pm here in NC and Buzz has 1500 mg Oxycodone in him and is feeling a bit better, as long as he sits up and doesn't move!
If he is not remarkably improved by morning, we're off to Pinehurst to see the surgeon. And, obviously, if the pain doesn't subside, we'll make the trip before then if needed. You MEN can be SO damned stubborn!
The GOOD news is that Buzz completed the fitting for his mask and got a CT scan immediately after the PEG placement today. In addition to the IV meds given before/during surgery, I insisted that he take the Ativan, so he had no problems with the fitting...thank GOD!
I sincerely appreciate everyone here...It's great to know that I can have a panic attack about something, post, and get immediate responses from those of you who have already 'been there'...
Don't stop praying! Thanks...Lois
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#41670 08-27-2007 03:42 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Get him back to the docs, Emmylou, because that kind of pain is not anywhere near normal. I took only a couple of OTC Tylenols, and was out doing very heavy yard work the next day, with no pain at all. At the most, from what I have heard from other PEG people, there should be some slight soreness. | | |
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