| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Victor,
What is the glutimine powder for?
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Margaret,
I am really following your posts.
I am now at 9 rads. After just 8, I developed a noticeable "frog" in my throat. Although my mouth and throat felt reasonably OK, but for the frog and sore tip of tongue; I felt generally lousy all day Saturday.
I was concerned that it is hitting me early (still am), but Sunday I felt pretty good and despite today's zap still seemed OK so I went out to dinner with friends.
I really hope I can make it to 20 like you have before needing my PEG.
I haven't been putting much down the PEG. I was supposed to get up to two cans a day this week. Wednesday I have my appointment with the dietitian and she will not be happy.
I just despise the PEG and probably will until I need it.
Keep posting so I will know what to expect.
Thanks
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: 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 | Consider the Carnation VHC if you can get it down your tube since it has 560 cals in a can which would mean less feeding time to get the same or more calories.
Also don't stop swallowing because your using the tube. Swallow water or something everyday to keep those muscles in shape.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | David,
On your advice I did buy a couple of cases of the VHC which I was drinking until this weekend. I think it may be a little too thick to put down the PEG though. Also, my insurance covers the Jevity (or as a friend has dubbed it, the "Levity") but not the VHC - so I think I'll save it until I can handle things by mouth again. As far as the swallowing, yes! I am still swallowing as much as possible and met with my swallow therapist today. We talked about which exercises I still should be doing, coordinating them with when I take any painkillers and just general swallowing stuff. She is absolutely terrific!
Don,
I may have been a little stubborn about not using the PEG and waited a little too long. Of course, I didn't have one for a bit, and after the new one was put in, I wasn't sure if I should use it right away. I have started having serious mucous build up now which didn't start until the end of last week, but Robitussen is helping tremendously. I just got some of the Lidocaine gel today and will try it out soon. The mouth sores are getting pretty bad.
I think its great that you went out with friends! The more you can do "normal" stuff, the better!
- Margaret
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Margret
Thanks for the info.
I made a note on my calendar and it seems I might just have one week left before having to face PEG reality.
I think I might be starting to get the mucous a bit on the roof of mouth. I will pick up a some Robitussen (it is OTC isn't it?). Also do you swallow it or just gargle and spit it out?
They are giving me a Liquid called Nutren 1.0 (with fiber). It only has 250 calories per can so I will have to use nine cans a day, but I think that also covers a lot of my fluid intake requirements. They delivered a months worth of cases, so to para-phase what said "what the Cancer Center and Insurance wants me to have".
Also managed to go to a film party last Thursday, real nice with a fabulous Greek feast. Once I got there I was fine which surprised me since usually by Thursday I am real RADed out! Hardest part was getting out my front door! While at the party ...I don't know if was supposed to, but a had a couple little glasses of Champagne (passed on that awful Greek pine-sol wine).
Keep us posted on mouth care, the does and don't.
Thanks
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:
Robotussin is a liquid medicine. The tube is great for taking meds. You dont have to taste that awful stuff, just measure it and put it in the tube. Make sure you flush it good with water afterward. Also some pills can be dissolved in water and put in the tube too. Ask your doc or nurses if its ok, some time release meds cant be done like that.
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 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 | Don,
Be sure to ask because I don't think you get much in the way of hydration from those cans. I was told to drink at least 48 ozs of water each and every day in addition to the calories I was drinking.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Don,
The Nutren comes in a higher calorie form...Bill was prescribed the 2.0 with Fiber which I think, was 375 calories per can. You might try to call your insurance carrier or the home health group that supplies the supplement (and bills your ins co.) and see if they will approve the higher content can so you don't have to pour as many into your PEG each day. (6 vs 9)
I had good luck with the HH supplier meeting our needs...they never billed me and were very ready to get what we needed and deal with our insurance carrier (Aetna.) Anytime I needed supplies, they were delivered or mailed to our house. One less battle to fight during our war last summer. Lovely!
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
| | | | | 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 | If I'm not mistaken others (well at least one) have gotten their insurance company to pay for their VHC.
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: 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 |
My insurance company has paid for all the feeding supplies (formula, syringes, feeding bags, feeding machine) until just this past month. Something changed on my medical insurance and now its not covered. Alot of others on here also have their insurance paying for their supplies. It gets delivered right to my front door monthly.
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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