| | 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 | Also tell him to watch out "ringing in his ears" with the Cisplatin and to tell his MO immediately as it can lead to permanent high frequency hearing loss. I know for sure. The "ringing in the ears" to me was really a intermittent high sounding hum which I didn't think was "ringing" so by the time I mentioned it, it was to late for me. Also the people that have rec'd the weekly doses don't seem to have that concern or as much nausea so that's the reasons I mentioned asking for the weekly doses.
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, Has anyone had a problem with the peg tube if vomiting occurs due to the treatment? Richard isn't prone to nausea and the anti-nausea drugs are supposed to be really effective, but we were curious about what might happen. Coughing is bad enough and he can't imagine throwing up. I know the peg tube will help with nutrition and fluids, but it is such an odd thing to have in your body. I guess you get used to it after awhile. 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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Vomiting causes the same sort of 'back-up' that coughing does. When I'd feel a cough, or a vomit, coming I'd try to make sure the clamp on my PEG tube was closed tightly. Flushing would often have to occur despite my best efforts.
And to be honest, I never got 100% used to the damn tube, but I sure did appreciate it!
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 |
The peg tube wasnt affected at all by my vomiting. With your husband receiving doses like I had, he will feel ok for several days before and if the nausea hits him. Dont be fooled into not taking the anti nasuea meds, once the nasuea starts its nearly impossible to get a handle on it.
Thats one benefit of having the peg tube, taking meds. Check with the doctor about which are ok to go thru the tube. Most of what I had was able to be dissolved in water and put thru the peg tube. You can ask the pharmacist, they also know about that stuff. All I remember is that you cant crush or dissolve time release meds.
Make sure that the tube is flushed daily with water even if not actively using it. The peg tube isnt fun having, but it does serve a very important purpose.
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: Sep 2008 Posts: 10 Member | | Member
Joined: Sep 2008 Posts: 10 | Hi,
I like your ideas, but Pete I'm not sure what you are talking about attaching the peg to. Itself? Could you explain it another way? It takes me a minute or two to catch on sometimes. ha/ha
I like the the other ideas too. I might try to find an ace bandage at kmart tomorrow. It's just that it sounds a little confining, not that tucking it into my pants isn't. lol
Thanks for the ideas.
Love, Becky
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue.
9/26 Laser Surgery
10/9 First appt. at CTCA in Chicago
11/24 RO Tomo TX (5x wk)for 7 wks
11/26 Port Insertion w/access
12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks
12/15 - Peg Tube Insertion
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Becky,
I would use an elastic bandage, that worked well for me. That way you can tuck the end of the peg out of the way until you need to use it. (it does not snag on stuff that way). If it is too long you can always cut a portion of it off if is is way to long. You probably want to clear this with your physician, also give it some time to get used to it before you do this.
Geri,
Re vomiting, that I avoided although I came very close a couple of times. This always happened a few days after cisplatin treatment and only for about an hour. NOTE: I only had the small dosages, once I was on carboplatin I did not take anything. I would make sure that you load on meds before the cisplatin especially with the much larger dosage.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | What I had was a lanyard that could go around my neck, with the other end attached to the end of the PEG -- The lanyard has mini-snaps on it so the PEG can be easily separated from the lanyard -- When not in use, the lanyard holds the PEG and keeps it from flopping around.
I could have done the same thing with some string and slip knots -- The point is to keep the PEG available without needing to tape it down.
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 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I keep mine taped down because if it flops around it hurts at the entry site. I remember that one of the instructions that the girl gave me when I had it installed was it did not belong tucked in my panties. LOL She neglected to tell me how to clean it if it got clogged, or not to
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I keep mine taped down because if it flops around it hurts at the entry site. I remember that one of the instructions that the girl gave me when I had it installed was it did not belong tucked in my panties. LOL She neglected to tell me how to clean it if it got clogged, or not to soak in a bath tub with water covering it and other important things that have come up. But, I NEVER tuck it in my panties.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | If you wear PEG in tub and it opens, the whole tub will drain into you and you won't be able to even stand up! Then you will have no way to get the anti-soap nausea drugs in...
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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