Previous Thread
Next Thread
Print Thread
Page 1 of 5 1 2 3 4 5
#169727 08-22-2013 06:17 PM
Joined: Jun 2013
Posts: 262
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Did anyone manage to follow an anti-cancer diet during treatment? I'd like to minimize dairy and avoid meat and added sugar. I'm not sure how realistic that will be when calorie- and protein-dense liquids are all I can manage.

Just to be totally contrary by the way, I plan a blow-out at the best steak joint in the City before treatment. smile Trismus will have me cutting my filet into itsy bits, and it will take me 2 hours to eat, but I'll wash it down with a fine Pinot and no regrets.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
No. I could not eat for many months in the hospital. and was just on IV due to dysphasia, thrush, trismus, face, mouth and digestive tract burns, and lost 110lbs. Then was on a peg for another 10 months or so, and all that was just from chemo, which effects were worse than radiation. I could not eat many foods, most which nauseated me, burned my mouth, made me vomit, choke.

I follow no diet, but most my food is homemade, fresh. and I was just happy to eat and Taste food, which is extensive now, and was able to gain back 60 of the 110 pounds I lost in a few weeks, like two, but took me almost 4 years todo that. When doing treatment, it's best to advise with a nutritionist, dietician before dieting due to all tithe extra nutrients needed, including water, protein. so you don't want to be deficient in any, and it may not be the best time, unless something is dangerous like drinking, smoking, something too much excess. Just eat healthy in portion size controls for you based on the calculations of height, weight, BMI. Stomach, wrist measurement.

I'm with you on the steak! I had a 16oz ribeye, creamed spinach, garlic and sour cream, mashed potatoes, which I cooked, when I was leaving for treatment the next day.

The things you mentioned, lactic acid, sugar, are reportedly mentioned by some places as causing cancers, but is untrue, according to major medical centers and groups.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
I'm a vegetarian and lay very low on dairy too - I eat minimal sugar and flour.. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
During treatment, chem-rads, I went to a heavy protein diet using whey protein powder and making many protein shakes and drinks. This worked especially well when the radiation side effects started putting the hurt on eating orally. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Excessive protein can cause a hardship on the organs, especially the kidneys, which has to eliminate the ketones in the urine, and can also cause dehydration from the frequency, so that should be watched. I say adequate protein based on your needs, and excess nutrients also feeds cancer, so I say adequate with that too, which differs in everyone.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
It can be hard on you - during treatment though you need extra protein. I am a veg head so I have a protein power shake in the morning and that way I am good to go if I don't get enough in my regular meals... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
You will know when you have too much protein. The pancreas will have problems too. Extra protein is good but some type of exercise or motion keeps muscles feeding off it. For strenuous activity 1 gm/1lb of body weight. For little or none half that max.

Lipids are an important piece in nerve function. Lack of lipids creates more neuropathies. Things Ike avocados gives good lipids and lots of potassium which helps nerves after trauma. Nut butters in your smoothies, too. Vegan is good if you balance protein and potassium and carbs during treatment. I believe you will feel better and heal better.

Give me that ribeye though. Good red juicy meat!i Gave away my grill and buy 10 pounds of corn fed shaved choice ribeye in 1 lb packages. Cheesesteaks, Shabu-Shabu, sukiyaki, guy-don...all beef dishes.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
[quote]Give me that ribeye though. Good red juicy meat!i Gave away my grill and buy 10 pounds of corn fed shaved choice ribeye in 1 lb packages. Cheesesteaks, Shabu-Shabu, sukiyaki, guy-don...all beef dishes.[/quote]Dude, You are the man! We gotta swap sukiyaki sauce recipes. :-)

And gotta love that quality thin sliced ribeye - go protein - go fat. hey you only live once.

As to the protein supplement. In practice, it is quite hard to get anywhere near a gram per pound daily. Even half that is like 3-4 ounces of protein powder. And by the time you mix and dilute to go down smoothly, it is rarely an issue.

I only bring it up as the benefits of protein outweigh the potential of overdoing it. In fact, I can not recollect a single post where someone reported overdoing protein during tx or post-tx period. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2013
Posts: 421
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
"Cheesesteaks"

I'm originally from Philly/S Jersey... Tony Luke's in S Philly... "da best!" cheesesteaks! Shaved rib eye cooked with a little extra virgin olive oil, so tender it almost melts in your mouth. Crystalline jewels of fried onions, real Italian sharp provolone that smells like your dad's stinky feet, all on a fresh baked Amoroso roll with a crust so crisp you can practically cut your mouth on it!

It can make even the dryest of dry mouth produce drool wink
Whenever I head up there to visit family I get my cheesesteak fix. Although I'll have to abstain from the hots on the side for now.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jun 2013
Posts: 262
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Okay, somehow this "anti-cancer nutrition" thread has devolved into the Cattlemen's Recipe Exchange. smile


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I only eat red meat on Sundays and that's when I charcoal grill 2 1 lb Ribeyes with tons of marbling for my wife and I. I eat all of mine and she ends up sharing hers with Buddy and Lamont our 2 85 lb rescue Pit mixes.


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 2013
Posts: 262
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Hmmm, this crowd does like its ribeyes!

Cheryl, what shake/smoothie ingredients did you use during treatment? I am looking at hemp powder for protein. Did you use a particular powder? My hope is to transition to an anti-cancer diet long-term. I've been moving in that direction the last few weeks and definitely feel better.



53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
I'm not saying low protein or high protein, but adequate for the persons situation, and calculations, which could be low or normal protein intake, like when already having chronic kidney disease or high intake during illness, healing, exercise. Some may take a suggestion to eat high protein to be sky's the limit, the same with nutition, when excess feeds cancer, so they say, but at the same time, some may need to gain weight on a doctors advise, and just mentioning the other side of the coin, and to look into your needs. Treatment can also compromise kidney function (creatine, GFR) temporarily, and sometimes permanently, and excessive intake of protein can cause other problems with that, breakdown, dehydration, which is already common with Tx. One of the symptoms of protein toxicity, is nausea and vomiting, and ammonia smell. I may have had protein toxicity, i belived so back in '88, from heavy intake of proteins causing an ammonia smell, and ever since, I tried not to take in as much protein. Funny Ed mentioned the pancreas, and years later I developed diabetes, which I thought was related to high protein, exercise, but anyway, diabetes can be related to the pancreas, and now have chronic stage 4 chronic kidney disease from chemo, probably diabetes didn't help. Once the kidneys are damaged, the kidneys usually don't repair itself. unless it's from acute kidney failure, but it's compromise deteriorates your health, and survival.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
All comments posted here are never to be taken as gospel. Every person is unique and every case is unique and the combination makes each patient's journey unique and needs to be evaluated, assessed, and treated based on that specific uniqueness.

If we can no longer post generalities, commonly observed experiences, and needing to qualify every comment for every possible condition and exception, then you may as well just shut down the forum.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2013
Posts: 421
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
Generally speaking, cheesesteaks aside, a healthy low fat diet, one with a good balance of protein, low glycemic carbs, vegetables, fruit, etc. is good for us but seldom followed (raises hand). It makes sense that such a diet is beneficial to our bodies regardless of cancer.

Logically, after cancer, when our systems have been compromised, eating the right foods can aid with our own healing powers and immune systems. There have been some recent studies, albeit small, of diet and cancer. I'm glad to see the medical community looking into this subject. I'm all for healthy eating but knowing how indiscriminate cancer is, I believe diet alone cannot influence the beast one way or another.

We should all try to eat healthy, regardless of cancer. Perhaps it's the wording. Anti cancer? What about "anti bad health"?

"T"



57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
I agree, Don. You should follow your own rules, and don't ask for any studies, peer reviews, proof of anything or argue an opinion, which you often do. FYI, my comment wasn't necessarily directed at you, it could have been anyone, and it was just the words, "eat high protein", which is often posted, and most likely true, important, and I agree with, but maybe not for everyone or all the time, and amount may vary in everyone, at different times, and should be calculated, and just bringing out that information and the "cons" of doing so, especially that it may increase dehydration, so one should look into that. In your post it was "Heavy Protein" which sounded more than high? Ed mentioned an amount while heavy exercising, 1gram of protein for every pound of body weight, which is not often mentioned, along with eat high protein, and think the amount is important, different in everyone, Half that, If moderate or none, etc. The FDA daily requirement amount is different to. I have seen numbers for cancer patients and recovery from surgery more towards the 1 to 1, but don't recall exactly off hand. This wasn't the first time I mentioned it on other posts, so don't take it personally.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
I have a 400 lb very short aunt that eats fast foods primarily. Her cholesterol is 125, triglycerides 90. It is more proof that every one of us are unique. Monitoring cholesterol and bp is a good thing for anyone to do as it shows how the body is processing things. What I call "lifestyle" drugs to help these only makes the problem with a crutch, in my opinion. Aerobic exercise is not always possible but helps as does high fiber...as does protein, provided the body processes it well. After chemo and radiation almost all rules became confusing as the body is in a fight for life trying to figure out what that toxicity introduced really is and how to regulate it while protecting the body.

I think all of us (hand raised very high) determines what works best for us and wants others to do it too since it worked. The point of sharing this is to merely give a starting point to which we should adjust based on blood tests and personal experiences. If I can sit down and shut up about water...we should all not take it personally! What works for one may not work for any let alone all.

If I challenge you on something it is not to say you are wrong or I am right. It is to say check this out, try and find a way to measure it and keep on keeping on.

I have had many friends get into some type of weight training at a later point in life and in the 80's it was all about protein. I saw many of them with pancreatitis because they were having protein shakes in excess. Most of them are diabetic, Type I or II and some have gone from pancreatic cancer. Was it the whey? We will never know. They should have had blood tests done to measure digestive enzymes earlier. That much I believe but I will never know. Excess bile, abdominal pain in the center or upper right quadrant are signs something is wrong with the liver, pancreas or gall bladder.

Just find what works, find a measurement and keep doing what improves your health.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
Cheesteaks do rule, too, by the way!

I have my own creation...the Seoul Cheesteak! I marinate shaved ribeye in kalbi (Korean BBQ) then I caramelized onions in olive oil or coconut oil, add some jalapeņos for the bell pepper taste, add in some sliced button mushrooms and then the beef with stinky feet provolone on top. I had to quit toasting the buns because toast collects in the throat pockets and the choking while eating becomes a choking all day afterwards. I scoop it on and enjoy the heck out of.

I saw on TV a study about walking 15 minutes after meals to prevent diabetes and to process fats and carbs better so I do that after 2 ribeye sammies. Don't know if it works but that's my story and I'm sticking to it.

Don, I try and healthify my sukiyaki too. I switch to tofu shirataki instead of yam threads for a tad more protein and less carbs, low sodium soy for my wife and I use organic raw eggs to dip the stuff in...Japanese style! I use the family tradition of at least 5 green leafy veggies too. For all red meat our rule is green leafy veggies with the meal.

Soy protein....the "imitation estrogen". Men should limit soy protein as it reduces testosterone production. I used to make my own tofu so I knew what goes into it and I used the pulp to create my own okara burgers. As my energy grows I may have to go back to that.

Gotta go...eat now! YUMMY!


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
Well that long winded post disappearing sucks! Maybe I will reconstruct later. I guess I used up my verbiage for the day.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
Cheesesteaks rule! My version uses kalbi (Korean BBQ) marinade. I caramelize the onions in olive oil or coconut oil, add in some jalapeņos for the bell pepper flavor, the marinated ribeye and after cooking I add some stinky feet provolone. I stopped toasting the bun since the dry toast makes my coughing during the meal an all day event with chunks of bread crumbs coming nonstop. I call it the Seoul Cheesesteak.

I saw on national news some studies that said walking 15 minutes uses after eating fat foods or high starch foods helps the body prevent Type II and maybe Type I diabetes. I figure it must balance the sins!

Don, I healthify my sukiyaki by replacing the shirataki with a tofu version. Our Japanese family tradition is to add a minimum of 5 green leafy veggies to it too. Our rule is all red meat should be followed with green leafy veggies. I used to make my own tofu so I know what goes in it. I use the leftover pulp to make my version of okara burgers with carrots, onions and spices.

I try to limit soy proteins because of the "imitation estrogen" effect on males. It effectively lowers testosterone.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Jun 2013
Posts: 262
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Ideally, people would have the opportunity to consult a nutritionist and plan a diet tailored to their individual needs.

I don't think diet alone can thwart the beast....but I believe it can influence it. At a minimum, going into the fight healthier gives you a better chance of completing treatment. Beyond that, there's plenty of evidence that diet influences a number of cancers, even if not HNC in particular (so far). Our bodies have demonstrated a climate hospitable to cancer, and diet, stress and exercise are factors we can control that have the potential to roll up the welcome mat, or at least lock the screen door.

I'm just learning about all this, but I personally find the studies purporting that diet can affect cancer compelling. In particular, it makes sense to me that reducing oxidative stress and inflammation can help my body fight off cancer. That's why I'm wondering specifically about an anti-cancer diet, as opposed to a generally healthy diet. Avoiding dairy, most meat and added sugar is a HUGE lifestyle change here at Chez Mama.... but then cancer is the biggest motivator I've ever had. I will also admit that it comforts me to think there are factors I can control.



53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I wish someone would come out with a study proving beer helps keep cancer at bay.


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 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
David, I authorize the beer study providing you can self-fund. Anxious to see the results of your study. Be sure and get lots of data please.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
I saw my other blank post. I guess since the servers were changed we must have a limit now on number of words. I see them in preview the second one I watched post and even saw it. Very frustrating. iPad must not like the servers or vice-versa.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I must start right away! This may take years and years of diligent testing but I won't let anyone down.


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 2013
Posts: 262
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Definitely HOP to it!


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Mar 2013
Posts: 421
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
[quote=Uptown]the beer study[/quote]

Four months post Tx I started my own study. 1st test was Sierra Nevada Kellerweis. No pain and an absolutely amazing taste. I had two just to be sure my data was accurate. A huge improvement in mood and spirit was aptly documented.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Hi Mama,

Here is a report that says eating raw garlic may help prevent lung cancer.
http://cancerpreventionresearch.aacrjournals.org/content/6/7/711.abstract


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Hey Mama... sorry just noticed this thread again!!
Hemp is good protein but it's not complete. I use 2 of 4 kinds. My favorite combination giving me apprx. 42 grams of protein is a mix of precision vegetarian protein (I buy the vanilla - but they have berry and unflavored too), and sunwarrior rice protein. (love the sunwarrior it is smooth not gritty like others can be.) Or I use progressive harmonized vegan protein, and the sunwarrior rice when I can`t find the precision. Sunwarrior just came out with a new protein that is a comprehensive complete protein, but I use it minimally because as a protein it`s quite expensive ($60) and requires double the usual one scoop to get the same amount of protein as the precision or progressive. Therefore it makes my smoothie super mucky and costs way more. (I`m finicky) The sunwarrior rice is 15 or 16 gms of protein but it`s one smaller scoop - and the precision or progessive is 24-26 gms in a scoop that`s just a little larger that the sunwarrior rice scoop. The rice mix is not cheap either (also $60) but it lasts a long time. Harmonized vegan, is about $29 but the tub is half the size of the precision which is either the same price or cheaper. So generally I do the precision and sunwarrior rice. I`ve tried a LOT of vegan proteins - I am wary of anything with sugar in it and all of these use stevia to sweeten.

The precision, progressive, and sunwarrior complete are a combination of hemp, chia, flax, rice, pea, cranberry some or all basically making them a complete protein. Usually I toss in flax seed (ground - I grind it fresh) and a banana and berries... YUM...
I also use almond milk. unsweetened vanilla. yeah! take care


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Apr 2012
Posts: 111
"OCF across the pond"
Senior Member (100+ posts)
Offline
"OCF across the pond"
Senior Member (100+ posts)

Joined: Apr 2012
Posts: 111
Add me in to beer study please. I will self fund.


Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Done!

So now we can claim this is an International Study!


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 2013
Posts: 78
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Hi Everyone,

Instead starting new thread, i decided to ask question here only. Please forgive me if I am at wrong place. At a very high level scanning of this particular thread, the question is, should I avoid meat from my diet?
I am consuming 80-100 grams (a little piece of chicken fully steamed with rice and black beans) every single ONCE a day. Is this OK, or this might create a problem? I thought as a one of the source of protein along with other alternatives.

I saw repetitive advises to stay away from dairy and meat products. I am taking one ensure and a milkshake like Christina said besides other meals I enjoy. Trying to hit 2500 C everyday.

Another question is, is taking a small piece (10- gram) of full fat butter and a 1 tablespoon of cheese OK? My perception was, I need fat also in my body besides other elements.

Please share your thoughts on my consumption pattern based on age factor. FYI, I am scientifically trying to intake all possible nutrients my body needs, not just as a preventive measure or curing.

Thanks in advance to all respected members.


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Ankur,

Eat everything you possibly can eat. Eat all the fatty foods you normally stay away from. Eat plenty of french fries and hamburgers. The goal is go get as much weight on now. You have one month before rads - you WILL lose weight so build a buffer now.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
For an in depth discussion, seek out a nutritionist at your treatment center. You should have one available to you. Ask about after rads nutrition. A healthy balanced diet is the best you can take in but now is the wrong time for this. During treatments you need to push yourself to get those calories in. Its not the right time to get overly concerned about what you take in to achieve those calories. Meat contains protein which helps healing so avoiding meat would not be a good decision.

If you are pushing to get 2500 calories daily, push a little harder. Its even ok to take in 3500 or 4000 calories daily. Your body is fighting the treatments plus cancer and is burning calories at an incredible rate. Its almost like athletes in training.... they can do 7000 calories daily.

Radiation will get progressively harder as time goes on making your daily intake target harder to reach. This is why you must get into the habit early to make it easier to hit as time goes on as you will be used to it. I cant stress how important your calories and water intake are during and for the 1st year after rads ends. It will be the deciding factor in how well you do. Now isnt the time to worry about what is making up the calories, that is secondary to hitting your daily intake goals. Bulk up, you will need the extra pounds.



Christine
SCC 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 smile
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
Ankur, what is your goal weight? I'd blow away in the wind eating like that. As Christine suggests, I would consult a nutritionist and determine what you need based on weight you began with and whether or not you are able to maintain it.

Just my two cents worth.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
hi Mamacita. Okay - everyone here knows my views on diet. But I will share them again. I must admit I am biased I am a vegetarian/vegan and have been for years. I do credit it with keeping the cancer I had in check as I'd had a problem with my tongue for several years before it was finally diagnosed as cancer. It could very well have been displasia and then changed later - however, the tumor in my tongue had been there for some time. I know this. Anyway.

I agree you should get all the calories you can while recovering. Particularly if you are having issues eating and maintaining weight. Where I veer from the average advice giver, is in the type of calories. Everyone here says eat as much fatty food as you can. I disagree... While fat calories are necessary, and while they do help you gain weight, they are not the best way to get calories. They are empty.. and can clog arteries and have a long term effect on your health. Kinda like sugar calories. Ideally, get your calories from proteins, and complex carbs with the right amount of good fats.

I mean would you tell a sick person to eat at Mc Donalds and In and Out burger daily? NO!!! What you need are good calories. Flax oils, olive oils, not fried, maybe in a salad or added to other fluids (boullions, water) if you are sauteing.

I am not saying avoid meat. I am not going to push my beliefs on anyone. Personally I've read enough to support my health choices.
However if you do quit make sure you replace it with an alternative protein.

I put 2 tbsp of flax ( I grind it myself ) in with Almond milk (an awesome alternative to milk - and you can make it yourself from raw fresh almonds or buy it... preferably unsweetened) - I avoid soy if at all possible. And I add a plant based protein powder. Christine's shake is great and has calories galore. You can still make it just maybe modify the ingredients to be less dairy based if you want.

Try fresh legumes, and green leafy veggies (in soups - lentils, chick peas, beans, spinach, kale etc. ) Quinoa, chia, rice are also good sources of protein. if you don't like the texture toss it into a blender and make a smooth soup. You don't have to replace all meat and dairy at first maybe minimize it to see how you feel. There are a lot of alternatives out there to butter, and cheese, and you can even make your own cashew and almond cheeses.

Most importantly avoid processed foods. Basically eat healthfully, It doesn't have to be fatty. Just full of calories. hugs. Fat calories are fast and easy but easy isn't always the best way to do things. hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
Soy is NOT bad and should be part of everyone's diet.

Soy's isoflavones are credited with producing the healthy benefits. The isoflavones were first considered to be ''plant estrogens" and estrogen-like in action. But experts now believe they may also work in other ways, such as having antioxidant properties.

Among the findings of the working group:

Soy relieved certain menopausal symptoms. Utian says the relief from hot flashes is typically moderate. According to research, soy does not work as well as hormone therapy but was better than placebo, Utian tells WebMD. "If you give estrogen a 9 out of 10 score, and placebo 4 of 10, soy would be about 6.5."

Supplements with a higher proportion of the isoflavone known as genistein or increased S(-)-equol, which is made by intestinal bacteria from the isoflavone daidzein, seem to provide more benefits than other products.

Soy from foods is linked with lower risks of breast and endometrial cancer in studies.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Soy is not bad if you are eating soy beans or natural versions of it. The problem with soy milk/soy proteins etc, is that they are now highly refined and have a whole bunch of crap added to them - they've been messed with so you really don't know what you're ingesting which is really sad. You also don't know how much natural soy you are getting and what else is in the drink/protein. Years ago everyone jumped on the soy bandwagon and now its so refined and genetically modified that on some cases it's actually not good for you depending on what you are buying. Also if you have any other issues (any kind of hormone related cancer) they recommend avoiding soy all together.
Hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
I'm with you on that Cheryl. I am very fortunate in that I am currently able to get almost all of my nutrition through food. I have eaten a lot of soy products for well over 50 years and that plays a role as well. Likewise, I was raised on MSG and for Asians, it would be hard to say it reduces the ability to learn as children as many studies suggest.

I used to make all my sky milk and tofu from organic soybeans for many years. I just don't have the time or money these days.

The hormone warnings are primarily for males because of the "estrogen" effect but it really has to be in significant high volumes. The benefit for women may be a good thing.

Sudden introduction of anything new to the body can have deleterious affects. I know of a lady that decided to listen to everyone telling her to drink more water one day. From noon to 7 pm she died from over consumption of water. Who would have imagined that?? It wasn't gallons either.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Drinking excess water lowers the serum sodium.
This then causes the brain to swell . If this is severe and untreated, yes it will kill you. ( just thought I'd add )
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Chips anyone? (just joking... ) and yup - Tammy is right. It's all about moderation and knowing what you are eating and drinking. hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Nov 2013
Posts: 9
Member
Offline
Member

Joined: Nov 2013
Posts: 9
Hi All...

Xantippi here and I totally agree with the responses that say try to get as much weight ON as y0u possibly can right now.

Also let me say congratulations for coming this far. Glad you are able to eat... right now.

I too did great right after surgery... pretty radical surgery too, my doctors were very impressed with my recovery. Then I had radiation therapy.... and OMG... I was totally not ready for such extreme reactions to the radiation.

I had lost weight after the surgery but then I lost lots of weight as a result of the radiation therapy.

Everyone is different, to be sure. And no one can tell you exactly how you will react to the radiation, but for right now... do not worry about what you eat as much as just EAT. Put some weight on... and once you get to where I am now... many months past radiation and then I had another type of cancer in my lung found in the middle of my radiation treatments... again OMG! (right?)... but all done with all of it now.

And NOW I do have to watch what I eat... I pick my foods carefully, I eat a lot of broiled salmon and lots of greens. I juice carrots every day... brown rice, once one of my all time fav foods is one of the only foods I can no longer swallow. Swallowing rice is like trying to swallow sticky pebbles... no lie. They just don't want to go down and when I force them down with water... I cough and cough... and they almost hurt to swallow. so no rice but I do eat whole grain breads with lots of nuts and grains. I eat ground flax seed on my oatmeal every morning... about a table spoon full.

So again... don't worry too much right now about what you eat. Just eat as much as you can now... and good luck to you for your struggle from this point forward.

My thoughts will be with you.


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
Joined: Jul 2014
Posts: 42
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 42
While I have only had to deal with surgery - On top of your normal ensure/nutrition shakes, I would suggest adding some homemade protein shakes using a high quality protein powder and blending in healthy foods like greens, fruits, soy milk etc. It helps keep your calories and protein up and lets you get the nutrients from foods you wouldn't be able to eat whole right now. I also made soups with healthy vegetables and then blended them until they were smooth. I think it is realistic to at least have half of your daily intake coming from these. Every little bit helps!


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Sep 2014
Posts: 86
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 86
Older post but there is certainly still some good information in here.

I also found it a bit strange that so many of the foods that I was encouraged to eat at the hospital when first getting out, and in the initial stages of recovery, was quite heavy in fat and sugar. I had to find a way to pile on the calories, so I'd eat a big honkin' milkshake every day. Lots of ice cream, then I'd add whatever I want to it. Sometimes just cocoa powder, sometimes fruit, sometimes peanut butter or coconut milk. But I'd always add a scoop of whey protein powder.

Soups are pretty easy to eat too, but so many of them are so high in sodium. Thankfully I had a teammate on my dragonboat team that used to be a chef, so when I first got home from my surgery, he had made batches of four different soups, and put them into some freezable containers. It was a very nice thing for someone to do.

One thing I did find useful was to make my own juice. I had bought a masticating juicer even before my diagnosis, in an attempt to find a way to increase my vegetable intake. It's sometimes tough to eat enough vegetables the regular "old fashioned" way. I found that having a nice green juice every second day or so helped me feel better. Something with some kale, cucumber, celery, an apple, etc. Sometimes I'd add some carrot, beet, lemon or ginger to switch it up a bit, or trade out pear for the apple.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Page 1 of 5 1 2 3 4 5

Link Copied to Clipboard
Top Posters
ChristineB 10,506
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
Paulp1, harrykklee, GaDaughter, Carole O, Benni
12,768 Registered Users
Forum Statistics
Forums23
Topics17,986
Posts196,005
Members12,769
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5