#78378 08-08-2008 07:54 PM | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Today was Rad 18, so I am now on my last half. Actually, if they keep getting good alignments, I just have three weeks left (15 more rad sessions). Wish I could hold my breath for ten minutes  I have been hoping to make it to this weekend without major issues and unless I wake up tomorrow with a problem, except for totally haywire taste buds, I have My throat has really improved and I can eat about anything again. Unfortunately, it all tastes so bad. Yesterday I was munching on a sugar cookie and sipping an Ensure, but they tasted so bad I finally just dumped the Ensure down the tube and tossed the cookie  I must report; I have finally been Assimilated into the PEG Borg Collective! Still no mouth sores, but my neck is really burnt (no open sores yet). Everything I have tried to put on it seems to sting. I have read about a cream called Aquaphor � any users? Any other good suggestions?
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
| | | | | 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 | Don:
I was given aquaphor when I went thru radiation. It was kinda like petrolium jelly and didnt seem to work for me. I then got prescription cream called BetaVal cream (Betamethasone Valerate). That stuff worked the best for me, there are several different kinds the docs will suggest.
Welcome to the world of PEG users. I sure wish we both werent part of that group. Ive had mine for 1 year already.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I used Aquaphor like it was going out of style from day one. I never let my neck dry out except for when I had treatment. I would wash it off in the morning before treatment and then put it back on when I got home from treatment. I'm still using it. My neck fared quite well through treatment - it got really red and a little gross looking the last week, but it healed really fast. Now that I'm out of treatment, I clean my neck with diluted hydrogen peroxide and then slather the Aquaphor on it. But I'm sure there are better creams out there especially since your burns already hurt, ask your RO or your nurse, I'm sure they would love to give you some options (maybe get a small tube of Aquaphor to get you through the weekend).
I think the worst part about the neck burns was how hot my neck stayed all the time (it made me sweat!) - anyone else have that problem?
I remember getting to the half way point and being so antsy and ready for it all to be over! It seems like it takes forever but it goes fast! Make the most out of your PEG tube while you have to (but keep eating and drinking by mouth as much as you can every day) and then get rid of it as soon as possible!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | 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 | My suggestion is to not be fully assimilated to the Peg. You better keep swallowing every day as often as you can or you will pay a hefty price later. I am convinced that I don't have any swallowing problems post Tx due in a great part to me being forced to swallow since I didn't have the Peg to fall back on.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I used aquaphor continualy amd I was healed up good after the rads and chemo were stopped inside of 2 weeks. It worked wonders for me but like you I didn't have any mouth sores from it. I hadenough trouble in there from Rad seed implants in my tongue.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | I got a jar of the aquaphor. Thanks for the recommendation. It is messy, but it seems to be working and doesn't sting.
I'm already well cooked, but fortunately no neck wounds yet.
Saw one of my RO's today and he said they now want me to go the full 35, so that means three full weeks left (15 more rad sessions). Not having a primary tumor site to shoot at, they have gone back and forth from 33 to 35 sessions.
David,
My mouth is still in pretty good shape and I am chewing gum and drinking lots of water (despite the peculiar taste), but gave up on food - everything just tasted too foul, lost my appetite and was beginning to lose weight.
They don't want me to lose more than a pound a week (if any). I seem to tolerate the formula just fine (but burp a lot).
Hope Margret is OK. With just 4 to go she can likely see that end of radiation road now.
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
| | | | | 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 | Don: You are doing great!!! Glad you are still drinking water, the more the better. Make sure you are also keeping up the calories, minimum 2000 but try for 3000 a day. Glad to hear you are able to chew gum even though you arent eating. That will help your jaw muscles. Are you doing any jaw exercises to stretch you jaw muscles? If not might want to check with one of your doc's or nutritionist. A few exercises now could prevent big problems later. Keep up the good work
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hi Don! Thanks for the thought Just finished my final chemo infusion today, and yes, only 4 rads left to go! I'm in surprisingly good shape, no blisters or sores on my skin, but my mouth and throat are a mess. I think I'm gonna have to start taking more pain meds. Thanks to my PEG, I haven't lost any more weight and I'm staying well hydrated. The biggest struggles I'm having are being just flat-out tired and the horrid secretions/mucous. Last night and this morning I gagged so badly I threw-up and I prefer NOT to make a habit of that. The end of the road is definitely in sight though and for that I am most grateful.
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 | Margaret: Hang in there, you are almost finished. If the mucous gets too bad ask your doc about a portable suction machine. Try taking robotussin to help with the mucous. Also the water with baking soda and if you can tolerate it salt rinse helps too. Rinse as many times a day as possible. Keep up the great attitude
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Christine, I'm already doing the Tussin and the saltwater rinse (I can't use baking soda though because I'm oddly allergic to it if I use it topically). When I wake up in the morning and before that last dose at bedtime is when it gets bad. I did talk to my nurse practioner today, who I adore, and he also talked about staying hydrated to combat the problem. I guess I really just need to stay in front of it. I so don't want to have to get a suction machine 
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
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
