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#115211 - 04/09/10 02:10 AM need to stop losing weight
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
I need some help. My RO told me today that when I go two weeks without losing weight they will take out my PEG tube. It is still hard for me to eat a lot of things, but I am eating mroe and more, but still losing weight. What can I eat that will help me stop lsing weight or even gain a few pounds back so I can get this PEG tube out? Any ideas?
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115222 - 04/09/10 04:13 AM Re: need to stop losing weight [Re: walknlite]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
There is no magic formula. It is strictly a function of loading calories..... even if it predominantly through your PEG. You are burning 2000 calories a day doing not much. Your brain burns them, your body burns them to move, stay warm, and more. Sitting still you are burning calories. If you eat 2000 calories you stay where you are. If you eat 3000 calories you will add weight, not necessarily lean body mass, but weight. You are gong to have to be aggressive about getting high density calories into yourself every day, and you are going to have to bust the 2000 calorie number regularly. If you have the strength, light exercise will also build back some lean body mass that weigh more than fat. But do NOT over do this, if you burn too much in exercise you are going to defeat the whole formula. Except for the calorie loading, everything else in moderation. If you find that you have to do most of this through your PEG.... be honest with yourself, you are not ready for it to come out. If you can do this without it, the thing is history.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#115223 - 04/09/10 04:14 AM Re: need to stop losing weight [Re: walknlite]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8971
Loc: PA

You are still recovering and need alot of calories per day for your body to rebuild itself. Radiation as you know can knock you on your butt for a long time with after effects. Shoot for 3000 calories per day and that should help to sustain you. Are you using the peg tube at all? I eat and still use my peg tube cuz i cant eat enough daily.

Its nice to see you doing so well after everything you went thru.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#115231 - 04/09/10 12:11 PM Re: need to stop losing weight [Re: ChristineB]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
I am trying not to, because I want it out. I do not mind the weight loss, but after 100 pounds, I need to stop. Don't you think??
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115233 - 04/09/10 12:27 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Angelia,

I was consuming 3000 cals a day post Tx and wasn't very active until about 9 months post Tx when I resumed biking and I didn't gain a pound my first year. IMHO if you can eat solid foods without choking then demand that thing be removed. I am now close to 4 years out and I don't have the same propensity to gain weight as I did pre Tx. I was never overweight but pre Tx it seemed like I could gain a pound by just looking at a cheeseburger, riding a 100 miles a week or not.
_________________________
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.

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#115240 - 04/09/10 03:15 PM Re: need to stop losing weight [Re: davidcpa]
CherylR Offline
Gold Member (200+ posts)

Registered: 01/08/09
Posts: 216
Loc: Indiana
Mike has a hard time getting anything down and has lost about 70#. Had his PEG out way to soon IMHO. Anyhow, to stop his weight loss I concocted a shake to give him calories. It consists of 3 ensure plus, 1 envelope of instant breakfast, 1 cup of Haagen Daz ice cream (highest calorie I could find), peanut butter, half cup of heavy whipping cream, choc syrup (helps the taste a bit) and at least one cup of whole milk - more if he needs it thinned down. I figured one blender to be about 2340 calories. Have also used vanilla ensure and added some strawberry jelly instead of peanut butter. Just a thought.
_________________________
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

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#115246 - 04/09/10 05:04 PM Re: need to stop losing weight [Re: CherylR]
Eileen Offline
Patient Advocate (old timer, 2000 posts)

Registered: 05/21/02
Posts: 2152
Loc: Trenton, New Jersey
I didn't have a problem with weight loss and was put on a diet of at least 80 gms of protein a day. The only way I could come close to that was by supplementing my meals with Ensure Plus (use VHC has more calories) and milk fortified with Carnation Instant Breakfast. If you want to get rid of the peg, you have to be taking all these calories orally and not lose any weight for two weeks. You are back to work at school full time, so that is burning calories also. How tall are you and what is your current weight?

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

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#115256 - 04/09/10 08:37 PM Re: need to stop losing weight [Re: Eileen]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
I guess I need to eat it whether it tastes good or not. The only things I crave now are fruits and vegetables. I can eat most of the fruits in those fruit cups. I have also learned that I can now eat shrimp, not the fried kind. I loved it so much. some things I used to love I can not stand now. Just thought of eat ice cream makes me nauseated. I used to want it all the time. Isn't that strange?
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115257 - 04/09/10 09:14 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
I also found cooked ham slices easy to reheat and they usually contain a high amount of moisture. I combined that with mashed potatoes w/ gravy and baby peas.

Pancakes with sunny side eggs and plenty of syrup makes a messy treat for any meal.

Many TV dinners are high in moisture and calories. Sodium is also usually high but I figured I would deal w/ that later.

I always drank a can of VHC mixed half and half with whole milk with every meal which added over 700 calories to whatever I was eating.
_________________________
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.

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#115272 - 04/10/10 01:10 AM Re: need to stop losing weight [Re: davidcpa]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
I just lost 10 lbs the past 8 days that it took me a year to gain. I have no iidea why and I force feed myself all day long. I am very active but make sure I take the time for food a few times daily, I was up to 175 last week and this morniung, it was 164. Maybe if the food had taste and I didn't hurt and my mouth burn so much, I could do better. Just keep trying Angelia. I still have much faith in you.
_________________________
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

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#115295 - 04/10/10 08:54 PM Re: need to stop losing weight [Re: walknlite]
hisnibs Offline
Senior Member (100+ posts)

Registered: 05/23/09
Posts: 114
Loc: VA
I have been able to maintain and gain weight by having 2 ensures 3 times a day. I also use ensure as a base for smoothies. My smoothies include:
vanilla ensure, Healthforce Vitamineral Greens, Healthforce Earth, fruit juice, Flax seed meal, a coop of vanilla ice cream or yogurt and a piece of fruit. add stuff you like) I smoothitize it all with a braun hand blender. I have these smoothies with whatever else I can eat like sausage gravy, wonton soup, egg drop soup.
Admittedy the healthforce (dehydrated veggies, roots and barks, aren't the tastiest, but I mix 'em up to find recipes that I can bare ande sometimes really enjoy.
So I was 187 having lost 103 lbs aftet first surgery and got to 210 lbs in a few months.
After second surgery I went down to 180 and now am waffling between 185 and 195.
Also, others have said, do not over due exercise. I find myself too tired to take care of myself well and too sore which leads to me losing weight.


Edited by hisnibs (04/10/10 09:03 PM)
_________________________
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10

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#115389 - 04/13/10 12:34 AM Re: need to stop losing weight [Re: EzJim]
tristeve Offline
Gold Member (200+ posts)

Registered: 11/19/09
Posts: 207
Loc: Orange County, CA
I found that ensure plus got me on tract. It is about 300 cal per bottle. I too had lost much weight, a bit more than 22%. Docs were not happy and said I had to stop the weight loss before the peg came out, I drank 3 ensures a day plus eating food, eggs, iceream every night, meat, ect. I did stop the loss and still use Ensure. Just recently I have gained a few pounds. I guess I am seven months out now....wow, has it been that long???
You can get Ensure Plus at Costco for 32 bucks a case. Expensive but worth it!
_________________________
62 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the four year mark!
Back to swimming, biking and running!

Just way glad to be seeing the green side up!





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#115397 - 04/13/10 12:19 PM Re: need to stop losing weight [Re: tristeve]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Go to Sam's Club and get Members Mark. It's ensure but the label has Sam's Club Logo. Only $19 this way.
_________________________
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

Top
#116303 - 05/06/10 05:53 PM Re: need to stop losing weight [Re: EzJim]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 490
Loc: NW Ohio
Kroger's house brand is also similar to Ensure and is a lot cheaper, as well.
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#116320 - 05/06/10 11:28 PM Re: need to stop losing weight [Re: hisnibs]
hisnibs Offline
Senior Member (100+ posts)

Registered: 05/23/09
Posts: 114
Loc: VA
I wanted add that I seem to be over coming a lot fatigue by pushing thru tasks like working in a garden, mowing lawn etc.
_________________________
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10

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#116326 - 05/07/10 01:52 AM Re: need to stop losing weight [Re: hisnibs]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
hisbnibs, that is what I have done for years it seems sonce the 1st surgery and still do. My house is sold and al they have to do is tend the garden I dug and planted . Even rebushed the front yard for them.
_________________________
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

Top
#116347 - 05/07/10 05:49 PM Re: need to stop losing weight [Re: EzJim]
mightymouse Offline
Senior Member (100+ posts)

Registered: 05/24/09
Posts: 124
Loc: Connecticut
Angelia -

You might try supplementing with Carnation Instant Breakfast VHC (Very High Calorie) -- thin it first with milk, though, it's very thick and rich! You can get it from amazon.com by the case.
_________________________
Chris

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.

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#116438 - 05/09/10 10:01 PM Re: need to stop losing weight [Re: walknlite]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 61
Loc: DFW
I was 215 pre-Dx. Now 165. I've dropped 15 pounds since the PEG came out. I went through 6 sessions to stretch my throat after RT. Also had a colonoscopy during the last session. Lost weight fasting for the colonoscopy. Had an emergency appendectomy last week. Lost more weight during that two day process... my Oncologist is going to be mad. I was trying to maintain 180... I HATE Ensure Plus but still drink one every day...

I have started to track my intake. I use an iPhone app called My Fitness Pal. Tracks calories, weight, and exercise daily.
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116449 - 05/10/10 12:43 AM Re: need to stop losing weight [Re: MikeC]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Mike,

Try Carnation Instant Breakdfast VHC. It has 560 cals in the same size can so more bang for the buck. Post Tx I mixed the can with an equal amount of whole milk and drank one with each meal to "boost" my caloric intake. I still didn't gain any weight my first year of recovery so I can only imagine how much more i would have lost if I didn't do that.

Were you ever tested for HPV?
_________________________
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.

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#116463 - 05/10/10 02:48 AM Re: need to stop losing weight [Re: davidcpa]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 61
Loc: DFW
If I was tested for HPV, my Oncologist never mentioned it. I had barely heard of HPV until I attended a SPOHNC meeting after my treatment was complete. The bizarre part of that was my Oncologist was the speaker at that meeting (I didn't know that in advance).

Thanks for the Carnation idea - I'll give that a try. I drink at least one glass of whole milk with dinner most evenings, sometimes for lunch too. But I'll try the Carnation and milk too.

Did I say I was happy to find this place? grin
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116470 - 05/10/10 12:12 PM Re: need to stop losing weight [Re: MikeC]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
It's not to late to have your cancer cells tested for HPV. You don't mention a tobacco history but by your description you so far fit the HPV+ profile.
_________________________
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.

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#116472 - 05/10/10 01:20 PM Re: need to stop losing weight [Re: davidcpa]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 61
Loc: DFW
I smoked a pack and half a day, but quit ~15 years ago. Drank beer. My Oncologist said both were risk factors (as you guys know) but that he could not call either 'the cause' in my case. He said I didn't drink enough or smoke enough to pin the cause on either.
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116500 - 05/10/10 08:47 PM Re: need to stop losing weight [Re: MikeC]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Get tested for HPV.

He's also not qualified to tell you that your smoking/drinking habits of the past didn't have anything to do with your cancer either. Even if you test positive for HPV your smoking/drinking history may well have played a role in your cancer and may well play a role in your response to Tx.
_________________________
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.

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#116516 - 05/11/10 02:46 AM Re: need to stop losing weight [Re: davidcpa]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
Kinda academic at this point as to what the cause was. There are tests to explore this in the research world, but what difference would it make? My experience is that doctors seldom tell their patients that their lifestyle choices when they were younger brought them to the disease. It serves no good, even if it is fact. The patients end up beating themselves up needlessly for the choices earlier in their lives, and at this stage of things, what good does that do? One more frustration, One more, emotional burden to bear. It is easier just to say "I cannot say with certainty why this disease is in your life.... let's concentrate on making you well."

For me, I lost track of all the bad lifestyle and other choices I made in my younger years. We are all architects in some way (for the most part) of our own situations in life. I can't undo the past, I can only deal with the present, and only wonder about the future.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#116526 - 05/11/10 12:33 PM Re: need to stop losing weight [Re: Brian Hill]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Well I must respectively disagree with the statement "what difference does it make" because to me it made a difference. I avoided tobacco my entire adult life; I drank only casually; I always ate whatever "people" said I should and I avoided what they said not to eat and I exercised and tried to maintain a very healthy lifestyle. So this was my choice and I didn't want to hear that I had cancer caused by tobacco and alcohol and I hated when my doctors including Moffitt said "what difference does it make, you have the cancer and we're going to treat you the same way."

So I underwent my Tx and then searched and searched and finally found a link to HPV and then had to persuade Moffitt to send my slides to Johns Hopkins where they tested positive for HPV. Since then I have been on a mission, as all of you painfully know, to elevate the knowledge of HPV in this world.

My quest worked for me so if there are people out there just like me then you don't have to be satisfied with "what difference does it make." If it does make a difference to you then maybe you can make a difference. Looking back I have gotten articles written about me and my HPV; appeared on TV; appeared on radio; testified at the Florida House; testified before the CDC; talk to 100's of OC patients and caregivers every year; teach a yearly class at Moffitt; responsible for Moffitt now testing all HPV likely patients and perhaps influencing my RO to start his HPV study. Look at Brian, he was so touched by OC that he gave up his other life and started a foundation that is second to none in our cancer and that most other foundations could learn a lot from.

OK off my box.
_________________________
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.

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#116548 - 05/11/10 05:30 PM Re: need to stop losing weight [Re: walknlite]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 61
Loc: DFW
I didn't mean to get you two guys going at one another... :-)

I will asked my Dr about HPV. But, I am post treatment now, so I am not sure what difference the information will make.

Also - what do you mean my Dr isn't qualified to tell me the source of my cancer?

I was treated at the Cancer Center at Baylor in Dallas. I know Anderson in Houston gets all the press, but I was very impressed by my entire team of Docs at Baylor. I'll name'em if anyone needs a reference there.
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116549 - 05/11/10 05:52 PM Re: need to stop losing weight [Re: MikeC]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 490
Loc: NW Ohio
Hey, everybody, I never smoked in my life, was a very casual drinker, and I was also tested for HPV when I had my surgery. The test was negative, so I have no idea why I got it! My surgeon told me that there is a percentage of women around my age who get it, but don't fit any of the patterns. He said that it could likely be a virus of some sort, one that they haven't even discovered yet.
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#116560 - 05/11/10 09:47 PM Re: need to stop losing weight [Re: zengalib]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Four years ago when I was Dx'ed almost everyone was tobacco related. When I found out I was HPV+ it seemed like we started to see more and more come to the site that way. Then about 2 years ago we began to see a few much younger people come here who were non smokers but their cancer was in the forward part of the tongue and they tested negative for HPV so now it seems we have 3 groups, 1. HPV+, 2. Tobacco related HPV- and 3. Non tobacco related HPV-. HPV+ SCC has proven to be easier to kill and therefore less chance of recurrence while both HPV- types are typically the opposite.
_________________________
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.

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#116562 - 05/11/10 10:23 PM Re: need to stop losing weight [Re: davidcpa]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 61
Loc: DFW
So I want to be HPV positive??
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116564 - 05/11/10 10:49 PM Re: need to stop losing weight [Re: MikeC]
Elianne Offline
"OCF Canuck"
Senior Member (100+ posts)

Registered: 03/13/10
Posts: 126
Loc: Canada
I can only tell you what Gordon's surgeon said upon diagnosis:
"if you have to have oral cancer, this (HPV-related) is the one to have."
OK, he has a lousy bedside manner, but knows his stuff. HPV apparently
responds better to treatment than OC caused by smoking and/or drinking.
Anne
_________________________
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.

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#116566 - 05/12/10 12:15 AM Re: need to stop losing weight [Re: Elianne]
Patcey1 Offline
Supporting Member (50+ posts)

Registered: 09/28/09
Posts: 63
Loc: New Jersey
None of my doctors have ever mentioned HPV. How do I find out? I'm scheduled for surgery thursday; do I ask then?
Pat
_________________________
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011

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#116588 - 05/12/10 04:32 AM Re: need to stop losing weight [Re: Patcey1]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
They can test a sample taken at the time of the surgery, it is not expensive, and is a common test. If they are not capable of doing the testing it can be sent to an outside lab like the one a Johns Hopkins, and they will do it for them.

By the by, no one got my respected friend David and I going again, a search of the boards will find that we have this argument as a matter of routine about every 6 months when it comes up. I suspect that even as a science based thinker, I am less pragmatic about this than David. As long as this thing is in my review mirror, I just don't care. I don't think about it anymore than why I was a survivor in Vietnam when other better people didn't make it, nor why I survived helicopter and plane crashes that others did not. Dwelling on those things or the cause of my disease (I know, but not because I went looking) I find little purpose in, and for the most part I try to stay focused on my future. When I am an old man reflecting on the past, (hell I'm already and old man, but I mean sitting on the park bench feeding pigeons) perhaps I'll reflect on the fortunes and misfortunes of the various cards I've been dealt, how I played them, the choices that I made, the randomness of some of it, and the why of it all. For now I am too busy, to be exploring something that the answer to, will not change my behaviors or life. It does make me a bit more interesting to TV crews, when I talk about my sex life and HPV though.... It's a useful tool in my life as an advocate for the cause. But that is an application of the information that most would not have a use for.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#116593 - 05/12/10 12:35 PM Re: need to stop losing weight [Re: Brian Hill]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Well unlike our esteemed leader I was almost killed once in my life and I wanted to find out what was trying to do that. Maybe if I had led a James Bond life I would be more cavalier about it to. 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.

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#116608 - 05/12/10 05:51 PM Re: need to stop losing weight [Re: Elianne]
Pete D Offline
Patient Advocate (1000+ posts)

Registered: 11/19/05
Posts: 1128
Loc: Washington
I'm going to chime in here once on David and the HPV issue.

My original viewpoint was the same as Brian's, but I have also come to see that for David it has made a big deal. Here he was going along doing all the right things when WHAM! that piano dropped out of the sky and ruined his life, also ruining his bragging rights in process. By finding out that HPV is a likely source, he is reinforced by his life styles AND he can get the word out, pointing to his own case as an example. I can certainly see that it makes a difference for him for coping with OC.
_________________________
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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#116610 - 05/12/10 07:33 PM Re: need to stop losing weight [Re: Pete D]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Now if only I could find an article or research linking HPV and PEGs, we could combine both the OCF hot buttons. wink
Charm
_________________________
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

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#116612 - 05/12/10 07:50 PM Re: need to stop losing weight [Re: Charm2017]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
LOL - good one! grin
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#116632 - 05/13/10 02:34 AM Re: need to stop losing weight [Re: slim]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
Personally, I think dealing with the IRS as David does, is much more dangerous than many things that I have gotten myself into (or my government has gotten me into, James Bond indeed...).

I do have a natural curiosity, and I think that David has a good point, and that is if you can figure out how you almost got hit by a Mac truck by walking against the light, sorting that out in your mind is a very useful thing, which will keep you from making the same mistake twice. With opportunistic viruses, I don't think I can do anything different now that I know of, and like a piece of lead flying around in the air in the middle of a firefight, there is a certain randomness to viruses, be they HPV or the flu, that we have no control over, and cannot avoid exposure to. I would have to remain celibate to avoid it, and in my book, that just ain't gonna be.

As much as OCF tries to inform the public about HPV16 and the consequences of getting it, the truth is that the CDC thinks that about 80% of the whole US population will have some form of HPV in their lifetimes. We do not have any idea how many will get #16 vs. the other 129 versions, but we do know that the vast majority of people that get it, will have it cleared by their own immune systems, and it will be of no consequence to them. That being said, it is impossible to know today, given our understanding of our own genetics, how to determine who is in the group with an immune system that will recognize it, and who is not.

Given that, the ONLY thing that you have control over is getting screened for oral cancer every year. Maybe you are one of the lucky ones that has a perfect, robust immune system, maybe like David and I, you do not. We can't know or control that until it is too late. So OCF's mission is to drive people to annual opportunistic screenings, and we tell them about HPV because we want them to understand they cannot control this (like they could other risk factors like tobacco) and catching it early, is your best chance of staying on this side of the grass.

I do not find anything wrong with David wanting to know. I only comment on this occasionally, (as long as the treatment protocols stay the same) to make sure that it all stays in perspective. (Please note that on today's posting by David about PEG's I bit my tongue and offered no comment about continuing to swallow things if you have one. Indicating I am capable of restraint occasionally.)

I often used to wonder what attracted me to my first wife, who in our divorce, really cleaned my clock financially and in other ways. I finally figured it out, but after the fact, it was nothing more than an interesting observation on how my hormones were raging and how little control I had over them or my emotions. I still got my clock cleaned.... And figuring it out didn't put any money back in my account.

I would also like to say for as much as David and I like to snipe at each other in good faith and jest, I also agree that his passion for it is a good thing. It has turned him into a passionate advocate, something our disease does not have enough of, and we are lucky to have his passion on our side.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#117232 - 05/27/10 05:39 PM Re: need to stop losing weight [Re: Brian Hill]
airkitty Offline
Supporting Member (50+ posts)

Registered: 06/30/09
Posts: 70
Loc: Charleston,SC
I thought this thread was about food. Focus, focus.
mark
_________________________
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth

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#117535 - 06/07/10 01:18 AM Re: need to stop losing weight [Re: airkitty]
EmilyE Offline
Senior Member (100+ posts)

Registered: 06/06/10
Posts: 111
Loc: NC
My Mom has lost about 120 lbs..she was a bigger lady to begin with. Now shes down to 157. Ive never ever seen her this small and Im 25 years old. I wonder what happens to ppl that start out at a normal weight. Would you just waste away?
I know the cans of 'food' she supplements with are higher in calories than most but it still doesnt help
_________________________
my mom, age 59.

12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven

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#118356 - 06/22/10 07:43 PM Re: need to stop losing weight [Re: EmilyE]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
I think I lost a total of 110. I too was big to begin with and have never been this small. I love it. I also wonder how peopl that ae normal weight or underweight survive this horrific disease.
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#118553 - 06/26/10 03:50 AM Re: need to stop losing weight [Re: walknlite]
ESikon Offline
Platinum Member (300+ posts)

Registered: 06/22/09
Posts: 440
Loc: Texas
I too wonder how normal size people make it. I was a little pudgy, I just had my 3rd child and hadn't lost the baby weight yet. I lost about 65lbs, started at 168 and now I'm 102. I think the last time I weighed that I may have been in junior high.
_________________________
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk

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#149448 - 05/12/12 03:40 AM Re: need to stop losing weight [Re: EzJim]
phrannie Offline
Contributing Member (25+ posts)

Registered: 05/07/12
Posts: 31
Loc: Montana
Every meal I eat, I back it up with a high calorie nutrient drink...Waffles with tons of butter and syrup, backed up with an Ensure Plus....for breakfast. Lunch I usually have bean soup or some kind of legume, and another Ensure.....I actually gained 3 lbs doing this....I have no weight to lose (haven't since I started treatment)...when I gained the 3 lbs, you'd have thought I'd won the lottery and shared it from the reaction in the Dr.'s office...LOL.

p
_________________________
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.

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#149609 - 05/15/12 08:19 PM Re: need to stop losing weight [Re: phrannie]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Ron used to weigh 189 @ 6'1 and he was still thin size 34 waist BUT he had muscle mass on that skinny frame. Now...he weighs 132 maybe...but he is eating but not 3 meals IF he ate 3 meals I think he could gain back his weight but he says the time it takes to eat and what he has to go thru he would rather eat 1 time a day BUT sometimes he does eat more. His big thing still are my baked beans I make him every Sunday a small roaster full with a lb of bacon and they last him all week and he also eats Stouffer's Mac n cheese and creamed beef on toast and he had a taste for Cauliflour with lotsa butter so I made him that yesterday. He eats alot of pastas. Cheese caneloni's, and I made a homemade Pizza Pot Pie! He was able to get some crust down cuz it's soft. But he's still thin. He eats peaches canned and can get down fresh strawberries with sugar of course! He eats pretty good WHEN he eats! So far he 's doing good.
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#151250 - 06/25/12 06:51 PM Re: need to stop losing weight [Re: EmilyE]
Mike O Offline
Member

Registered: 06/24/12
Posts: 2
Loc: Eastern Ontario Canada
I really had a hard time near the end of my treatment and post treatment. I weighed in at 187 lbs. the first day of treatment. I recieved my first dosage of cispaltin and the first of too many radiation treatments. Certain smells made me nausous regargless of where I was (fuel, coffee, bacon, eggs, burt toast, meat cooking)very common smells just would make me feel horrible and became worse as time and treatments progressed. I would vomit at the thought of food sometimes. By the second chemo treatment I had lost a little over the 10% the doctors told I was not alowed to lose more than before they would stop treatment. I still continued treatment. By the last treatment of chemo I ended up with a gastral nasil tube which worked for about a week and got me through the final part of treatment. Post treatment My wife and I tried to continue with the tube feeding and meds in liquid form. I hit a brick wall and would throw it all up and would remain nausous reguardless if it was isosource, medicine or water. I amitted myself to the hosptal after the May longweekend here in Canada at 140 lbs. Ii had lost 25% of my overall body weight and was hospitalized for thirteen days hooked up through my P.I.C.C line in my are and fed TPN. The GN Tube was removed the first day. I felt better by day five but all the meds and blood work needed to be monitored daily and meds and TPN all liquid so I had up to five lines in me at one time on one IV pole. I looked like a science exsperiment. It got me through. I have been home for about two weeks now and am finding it a challenge to get the cals into me. I am sustaining weight but not gaining. The suggestions are very helpful on this site but sometimes a full bowl of soup will take two hours to consume and shakes an hour. My throat has gotten a little more sore lately and is exspected as I have read. I have increased breakthrough pain meds to combat the pain but doesn't always work. Time is what will tell. My new saying is "This is not the rabbits race but the tortoises. Slow and steady wins the race." I know what to exspect and the information helps and supports us patients in recovery, so I believe the tortoise will win if I keep a steady and easy pace. I tried to get better too fast too soon and found myself flat on my ass doing so. Slow and steady with a positive additude will surely prevail.
_________________________
SCC HPV 16, Dx Mar 08/12, 7 weeks rads (35 treatments) 3X cisplatin, NG tube X 3 weeks, TPN in Hospital post rads for 13 days.

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#151275 - 06/26/12 01:27 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
After I walked out of that dark tunnel appx 3 weeks post Tx I consumed appx 3000 cals each and every day and didn't gain a pound my entire first year post Tx so don't expect to start gaining it back any time soon. I am back to my pre Tx weight so the gains will come but not for a L O N G time.

Keep up that attitude as it usually takes us appx 2 years to recovery as much as we are going to.
_________________________
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.

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#151295 - 06/26/12 08:05 PM Re: need to stop losing weight [Re: walknlite]
Cathi Carpenter Offline
Supporting Member (50+ posts)

Registered: 02/28/10
Posts: 79
Loc: Aurora, CO
I was chubby 176 @ diagnosis and in 4 months, I was down to 109. Now stay around 115 but have to eat alot to even maintain that! The weight loss is definitely one of my "upsides" of cancer!

Cathi
_________________________
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***

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#151297 - 06/26/12 08:32 PM Re: need to stop losing weight [Re: walknlite]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
When our bodies lose weight during treatment, it's not generally adipose tissue (fat, stored "energy") instead its lean muscle mass.
The body kicks into a hyper-metabolic state during treatment, as we well know, and is burning calories at an incredible rate trying to heal itself from the treatments, maintain "normal" body functions, as well as trying to fight off the cancer. Due to the poor digestion/absorption environment caused by hormones, the body has no choice but to start cannibalizing itself, with lean muscle tissue being the fastest/best burning fuel. This is one of the reasons that cancer patients look so "flappy," with lose skin, no muscle tone, and high body fat percentage.

This loss of lean muscle mass is also a huge cause of weakness and fatigue after cancer. With the bodies constrained testosterone and high cortisol levels post treatment, recovery is generally slow which is why we feel so "blah," along with most certainly thyroid issues and lingering effects of pain medications. The key to getting back up to speed? Nutrition and Exercise, Baby!

You will hear me say often that nutrition is half the battle to fitness and health, I sincerely believe that. We have to understand that "what" we eat is as important as how much we eat and when we eat. A calorie isn't just a calorie, top level athletes and trainers have known this for "years". Everything we eat matters if we want to run at the "best" our bodies can. It's crucial to know the proper breakdown of macro-nutrients in our diets to promote the best hormone response as carbs affect cortisol levels in the body, fats help testosterone levels and cell repair, proteins provide the building blocks to all of our lean muscle mass. It's a balancing act using food to control the most important hormones in your body.

Knowing when to eat and what to eat and how much to keep your metabolism functioning, boost immune function, control hormone response, build or maintain lean muscle mass is paramount. You "are" what you eat! Nutrition isn't just "energy," it's what we're made of and who we are, and is the key to healing and rebuilding.
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#151298 - 06/26/12 09:55 PM Re: need to stop losing weight [Re: walknlite]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 930
Loc: Ohio
While we are on the fitness and nutrition bandwagon, let me put in another plug for fitting in some sort of physical activity as soon as medically allowed after/during treatment. I am convinced that one of the reasons my husband bounced back so quickly was walking the dog every morning.

Caregivers, too!!! If I had taken my advice better, I might not have gotten the auto-immune flares that I did.


Edited by Maria (06/26/12 09:59 PM)
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 02/2015 physical exam clear; chest CT's clear of cancer. On thyroid pills. Thrush finally gone. Life is good.

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#151361 - 06/28/12 12:59 AM Re: need to stop losing weight [Re: walknlite]
bbagby Offline
Contributing Member (25+ posts)

Registered: 07/04/11
Posts: 25
Loc: North Carolina
Reading about the massive amount of weight some people lose I'm amazed I only lost 20 to 25 pounds. But I only weighed around 142 to 145 when I started. I dropped to a low of 121 and am about 132 now (13 months after last treatment). I thought I was going so starve to death.
_________________________
Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.

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#151779 - 07/08/12 10:58 AM Re: need to stop losing weight [Re: walknlite]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
After losing 90 lbs, I have no weight but the weight of my bones and loose skin. I keep this feeding tube busy but can't gain an ounce. It seems I live OK with a weight of 130 & 129. My lower jaw without bone is the funniest looking part of me tho. Hell, but I am alive.
_________________________
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

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#151781 - 07/08/12 01:10 PM Re: need to stop losing weight [Re: EzJim]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Oral Cancer: the most effective weight loss program ever.
Hang in there EZJim. Even just rereading this thread, you had dropped from 175 lbs down to 164 lbs in April 2010. Now two years later you are only 130. Please take care of yourself my friend.

Charm
_________________________
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

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#151782 - 07/08/12 01:16 PM Re: need to stop losing weight [Re: Charm2017]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
I was too amused by the mid thread diversion of "who cares why I got cancer? Well, I do!" HPV dialogue to post my weight stats back in 2010 when this thread started. so here goes:
At the start of treatment, at 5 foot eleven inches, I was 177 lbs but most of that was lean muscle mass. I dropped down to about 130 during TX but since I had been 126 lbs during my fastest marathon days, that was withing my acceptable parameters . After TX, Shot quickly back up to 142 since I could swallow and eat. Then the recurrence, where after 12 days in the hospital I was a pathetic 119 lbs - ironically, that was after I had a PEG for the first time. Very slow recovery with feeding tube instead of first time just eating.
Now back up to 142 for a year as a result of hitting the gym 4 times a week for weights & Yoga. (they discontinued the Pilates classes - boo).


Edited by Charm2017 (07/08/12 01:18 PM)
Edit Reason: typos
_________________________
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

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