| | Joined: Apr 2009 Posts: 22 Member | OP  Member
Joined: Apr 2009 Posts: 22 | I have a consultation appt tomorrow to have a PEG placed. I can't take anything in by mouth. This is actually my idea, along with the knowledge I have gleened from this website. My mouth must know when I am about to try to drink a shake or eat something. Because as soon as I do, it starts hurting. I have pink magic, Caphosol. I have tried drinking/eating after pain meds have had time to get on board.
I was told by my RO before we started that I was to have 27 treatments. He would then do a few boosts to finish the total rad treatment. Anyone heard of or had this done?
Thanks,
Kenny
Dx: SCC lateral tongue April 09, Stage T1M0N0
PET scan clear April 09
Partial glossectomy April 09, no carcinoma present
IMRT started 7/9/09, finished 8/26/09
PEG inserted 7/30/09
PEG removed 9/25/09
ER Nurse
Keep the rubber side down....
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | My husband had 18 days of one treatment per day and 12 days of two treatments per day. Ask the techs doing your radiation what the plan is (unless you can corner the doc). Our techs had the schedule of when and how much.
Good luck
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | 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 | Kenny,
Where are you being treated?
Usually the max radiation they give us the first go round is appx 70 gy's with about an avg of 2 gy's per session so we end up getting 35 Tx's. I'm not a rad expert by any means and I know there are several different ways RO's play around with the rad sessions, like doubling up on Fridays but their overall goal is to kill the cancer and (just barely) spare the patient. With that said I would ask your RO why just 18 sessions.
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: Apr 2009 Posts: 22 Member | | OP Member
Joined: Apr 2009 Posts: 22 | Baptist Cancer Center in San Antonio. Cheryl's husband did 18 followed by 12.
Gonna get some sleep. Actually looking forward to having the PEG placed. TY for your thoughts and experiences David and Cheryl
Dx: SCC lateral tongue April 09, Stage T1M0N0
PET scan clear April 09
Partial glossectomy April 09, no carcinoma present
IMRT started 7/9/09, finished 8/26/09
PEG inserted 7/30/09
PEG removed 9/25/09
ER Nurse
Keep the rubber side down....
| | | | | 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 | Kenny, best of luck with the PEG placement tomorrow. If you need any pointers, let me know. I struggled with mine until I found the right formula, consistency and speed of the overnight feeding machine.
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 2009 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | I saw my RO yesterday and he told me that he is going to "boost" and "target" the last 8 treatments! Right now he is shooting me from like 15 different positions during the last 8 he is going to specifically target my tongue where I had the surgery and my left neck where I also had the lymph node removed.
30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
| | | | | 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 | Yep Trotti did the same with me. I remember the machine began with 7 different stops and my last week it only stoped at 3 spots.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Oooh Jim
that sure does seem to burn more .Rob hated it so please take extra care of your skin and mouth.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Apr 2009 Posts: 22 Member | | OP Member
Joined: Apr 2009 Posts: 22 | PEG insertion was successful. They told me to wait 4 hours and I was good to go. Somehow I got a case of Jevity 1.5 out of them. It seemed hard to get an 8oz can in, felt full. I don't think it was any different than trying to guzzle a can of Ensure Plus. The part I do not miss is my mouth killing me during/after I guzzled my Ensure.
Now, I have heard you all talk about the Carnation. I intentionally held off ordering to see if I was going to get the PEG placed. If I can keep getting Jevity free I will stay w/ Jevity.
Jevity 1.5 355 cals w/ high fiber
Ensure plus 350 cals
Is it better to just do bolus feedings w/ a 60ml syringe or ask for a pump? I feel better knowing I will be able to get adequate nutrition.
After 27 treatments I will have a total of 54gy. Currently, the IMRT is stopping at 6 locations. I guess the boosts will bring me up to the totals I have seen on here.
I was talking with one of the RO's in the group at the center I go to. She said that the radiation has effected me a little harder because I have fair skin and light color eyes. Why I share that I don't know. Maybe, it will mean something to someone down the road.
I feel like crap but am looking forward to the PEG helping me along the way.
Kenny
Dx: SCC lateral tongue April 09, Stage T1M0N0
PET scan clear April 09
Partial glossectomy April 09, no carcinoma present
IMRT started 7/9/09, finished 8/26/09
PEG inserted 7/30/09
PEG removed 9/25/09
ER Nurse
Keep the rubber side down....
| | | | | 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 | Congrats Kenny, use it often and fatten up. lol
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 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Fair skin and light eyes means you will get a much nastier burn than someone like me that gets a beautiful tan each summer. That being said. the XRT still gave me a nasty burn at the end. I used Biafine after each XRT treatment the last week of treatment and a few weeks after and it cleared it right up. Too bad they didn't give it to me sooner, because it is supposed to help prevent the burn. Ask about it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Rob had red hair,blue eyes and white skin,and he burnt from the first day unfortunately.I used gallons of aqeous cream on his neck but he still blistered.Our radiologist said it was because of his colouring .When he had the targeted boost it burnt him even more.There is not much you can do exxcept take good care of your skin and get antibiotics if the burns get infected.
good luck
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | I never burn, just tan, so like Eileen said I had an easy time of my rad in that dept. I did get red the last week but I just put some cream on it and all was good.
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) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I dunno, Eileen. I have fair skin & blue eyes and only had one small blister after treatment ended. My sister, also pale, had horrid burns during her radiation for breast cancer. My docs had assured me that skin color is not necessarily a good indicator of how you'll do with radiation.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | During my radiation treatment, I just poured generic Ensure down an empty syringe and let gravity do the work.
Now that I am on a PEG full-time, I find the pump to be a very good way to go because I can set it up to work while I am doing other things like reading, watching DVDs, sleeping, etc. I can vary the rate of feed drastically. If needed, I can easily water down the food.
BTW, I am using Nutren 2.0 which is 500 cal/can, so I only need to consume four cans to get 2,000 cal/day.
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: Apr 2009 Posts: 22 Member | | OP Member
Joined: Apr 2009 Posts: 22 | Does anyone check for residual gastric contents before next feedings with the PEG? If so how much residual is to much to have and still take in nutrition?
Dx: SCC lateral tongue April 09, Stage T1M0N0
PET scan clear April 09
Partial glossectomy April 09, no carcinoma present
IMRT started 7/9/09, finished 8/26/09
PEG inserted 7/30/09
PEG removed 9/25/09
ER Nurse
Keep the rubber side down....
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Not dead sure about this, but it seems to me that there are always some gastric contents, waiting for the next food intake.
I have routinely put four cans in a row through my pump.
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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