| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Be careful on the calories because they differ from person to person -- Consistently, from my radiation to the free flaps, the various dietitians have recommended about 2,200 calories for me -- If I was on David's 3,000 calories, I would be a slug -- OTOH, if David were on my 2,200 calories with his physically active lifestyle, he would be a toothpick! This is not a one-size-fitz-all matter.
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 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 | Ray,
Also watch out for the next few weeks as most of us had our worse time during this period.
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: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Ray,
Welcome tp OCF. I have not had the same treatment as you but the surgeries I have gone through sure make it hard to eat. I eat a lot of mac and cheese. It had gotten me through my recoveries. It may be different for you with your treatment. Hopefully if mashed potatoes can go down so will mac and cheese.
Good luck to you!!
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Ray in Texas
Pete points out again how important it is to raise these little issues specifically with your doctors so that even general guidelines on how many calories you need can be tailored to your specific situation. My medical team also felt that 3000 calories was not necessary and certainly not practical given my monomaniac insistence on not having a PEG and felt 2100 would do. Since I was a slug during treatment - it was fine. Now that I work out 6 days a week again, I need more calories, but I can eat solid food and swallow really well. Sorry you have to join this exclusive club.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | Thanks for all the replies. We had family here for a few days and i did not have time to respond.
Most of those foods have poppped into mind when daydreaming about eating. Being extremely active myself the plan was to shoot for about 3000 calories, but the treatment wore me down and made me a couch potato, so i've adjusted that down to about 2000 a day.
Since i posted i tried some mac and cheese and also some pasta soup. I was able to get them both down, but they didn't taste very good. I guess i have to live with that for awhile. I hope it's not long though
Again, thanks for the replies.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Ray,
As for the burn treatment, I too was prescribed Silvadene and that stuff did wonders.
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.
| | | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | [quote=davidcpa]Ray,
Also watch out for the next few weeks as most of us had our worse time during this period. [/quote]
So, what should i be expecting? The neck burns manifested after the treatment was finished. I'm now assuming that my BOT is probably worse than my neck. Only annoying BOT symptom i've had is an occasional gag reflex that causes me to have a few rounds of dry heaves with just a little stomach acid. This is irritating because it burns my throat and causes some discomfort for a couple days. There is no nausea with it. Once it was caused by a pill and twice it just happened all of the sudden.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
| | | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Ray,
With me there was a laundry list of causes, swelling, mucus drying to cement and at one point I discovered that I had been gaging on a hair that was wrapped around the BOT and dangling down from there (I would love to meet the blonde nurse!).
Drs put me on a nice antacid and I used little bottles of baking soda solution to get rid of the acid. RINSE RINSE RINSE. The irritation from the stomach acid can't be good for healing or your esophagus.
As always, check with your doctors
Good luck!
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | | 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 | Ray,
If you haven't answered that question yourself then you are probably going to be one of the very few that "breezes though" this period and just jumps right into the recovery phase and for that I congratulate you many times over.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | [quote=Ray in Texas]So, what should i be expecting? [/quote]
Ray,
I was one that went through treatment without significant problems - some neck burn of course, but that quickly improved.
I found that my first month of recovery was rough because my energy level seem to just keep dropping.
I went to the gym to see if I could get back my energy and crushed my PEG. Then the bloody thing got infected (again) so I had it removed.
Then I had a trouble getting back to eating because I had no appetite and no PEG so my weight started dropping.
After the second month I was doing good with the energy level but not so good with the weigh. I felt good but for nearly two more months, finding something to eat that actually tasted decent was only in my dreams.
Now I think it is almost all behind me.
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
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