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EricS Offline OP
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As mentioned many times on these forums, radiation therapy is the gift that keeps on giving. Over time the radiation exposure we've sustained will continue to breakdown tissue, weakening arterial walls, nerve lining, muscles, etc etc

The whole point of radiation is to create free radicals in a specific area to kill cells, and it's non specific so it's going to have an effect on everything in the area. There are some studies that show Spirulina, Kelp and other seaweeds, and foods high in antioxidants will help fight this overtime. The more I research nutrition and exercise the more answers I find.

So exercise, lower your stress levels, enjoy more sex, get plenty of rest (all which create favorable hormone response needed for recovery), eat your greens, get plenty of protein, and supplement Branched Chain Amino Acids, specifically Leucine, has a very important role in protein synthesis (the breaking down of protein into amino acid for either lean muscle mass or immune response). And of course don't skimp on the good fats (UN Saturated fats, specifically Omega3's) in your diets due to their role in hormone production and response. Here's a few great articles on the subject if anyone is interested



http://jn.nutrition.org/content/136/1/288S.full

http://www.ncbi.nlm.nih.gov/pubmed/12821279

http://www.umm.edu/altmed/articles/radiation-damage-000139.htm

I'm also a huge fan of working with Speech Language Pathologists to help with aspiration issues. Myself and JenSLP have spoken several times at the University of WA's SLP program as well as the WA State SLHA meeting on the subject.

Hope that helps

Eric


**** DISCLAIMER **** Before implementing any of the following suggestions consult with your physician. If making dietary changes while going thru treatment it could interfere with your treatments or medications. Many of the suggestions have not been scientifically proven to be helpful so use good judgement when adopting any of the ideas discussed within this thread. What helps one person may not be beneficial to someone else. Always check with your physician!

*Disclaimer to the Disclaimer* Your general practicing physicians know jack about nutrition so ask to be referred to a nutritionist with at least a masters and a history of working with oncology patients.

Last edited by EricS; 05-10-2013 11:09 AM.

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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Eric, good write up. Thanks. Regarding the branched chain amino acids there is something worth noting. As nerves become chronically denervated such as fibrosing after radiation, muscles atrophy. The branched chain amino acids are synthesized by muscles as opposed to the liver for other proteins. As the muscles start wasting from damaged neves the cells can become toxic. One sign is a maple syrup smell when perspiring. A clue to switch to more pure forms of whey vs amino acids.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
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.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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EricS Offline OP
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Ed I'm a huge fan of whey, which is where I get most of my protein. Yeah BCAA's should only be supplemented when the body is under attack or in need of repair due to the role of Leucine in both protein synthesis and the immune system and as an adjunct to dietary and supplemental proteins.




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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Hi Eric,Ed

I need so clarification on BCCA/Leucine supplementing. I am building a core base protein/carbo powder blend and want to ensure sufficient BCCA/Leucine/Glutamine/ L- elements, etc. levels.

Does raw protein whey concentrate (34%, 50%, 80%) /isolate (90%) contain any/sufficient BCCA to assist during active radiation treatments or is supplemental amino acids required to ensure maximum protein conversion for rebuilding damaged tissue resulting from radiation and other side effects such as thrush?


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
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EricS Offline OP
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When talking about any kind of physical recovery, be from physical exertion, surgery, injury, etc etc using a "complete" source for protein is paramount.

I've made several posts on these forums about the differences in protein, whey, plant based, eggs, etc etc. Any "complete" protein, which is a protein that has all of the "essential" amino acids, is needed for the recovery process as the bodies need for amino acids increases with the severity of the attack on, or repair of the system.

Now as far as protein goes, Whey is the performance standard in muscle recovery for the majority of top level athletes due to it's fast uptake and amino acid concentration. Every protein is compared to the gold standard, which is the egg with a Biological Value (BV) of 93 and it's excellent uptake into the system. Whey has a higher BV and Uptake than egg protein does. Plant based protein can match the egg in BV but is usually a much slower uptake.

Typically in body building 1g of protein per pound of body weight is what is commonly recommended, however in a calorie restricted situations more is recommended.

Dr. Layne Norton, PhD in Nutritional Science from the U of Illinois, who is also a champion natural body builder and powerlifter, recommends 1.2-1.5gs of protein powder per pound of body weight to help maintain lean body mass during periods of calorie restriction to force the body to breakdown adipose tissue (fat). If you ever see pictures of this guy, it's hard to argue his research due to it's results.

Branched Chain Amino's are used by athletes to help recover from intense workouts quicker and taken immediately after a workout as an adjunct to their high protein drink they'll consume. It just makes sense to supplement them in cancer recovery as well due to how the body works.

When your bodies immune system is activated to fight in infection, or disease, it's need for amino acids, specifically the BCAA Leucine is dramatically increased due to it's role in producing macrophages. Leucine is also the trigger for your body to begin protein synthesis in the body, the process of rebuilding lean body mass.

The triggers that activate the immune system also have the unfortunate side effect of slowing the digestion and absorption of nutrition, so using the fastest uptaking protein, and providing supplemental BCAA's makes sense to help provide the system with an abundance of "building material".

Anyway I hope that answers your question, if it doesn't than the answer is definitely "Blue". smile

Eric


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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Where is that darn "Like" button when you need it. What do you think would feed an atrophied muscle? Creatine along with a whey? Looking at some eastern electrical/acupuncture stim with an adjunctive protein regiment. Also supplementing with red reishi in diet with near elimination of all neuropathies. . See the latest studies from Memorial Sloan Kettering and Syracuse.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
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.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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EricS Offline OP
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Creatine basically "volumizes" your cells by retaining water, 70% of muscle tissue is comprised of water so supplementing may be of benefit, wouldn't hurt to try it. Funny enough I was just talking with a colleague of mine today about creatine.

Anyway I'm working atrophied muscle right now personally as the paralyzed half of my face has started to regain motor function after almost 5 years. The cranial nerve graft I had almost 3 years ago has started showing signs of success (nerve take an irritatingly long time to heal) and I'm seeing my disfigured side of my face reanimate and the muscles begin to fill in.

I'm working with a young man with a Doctorate in Physical Therapy and we are exploring both TENS and EMS, as well as acupuncture etc. Atrophied muscle with nerve impulse will need more protein and BCAA's definitely make sense and are a part of my personal regiment.

Hope that helps


Eric


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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Thanks, Eric. You should research the reishi. I don't know what other meds you take and I would caution you to check out all the side effects and interactions first but there is belief based on empirical data that they repair nerves or improve the body's ability to repair nerves. I have tried dozens upon dozens of medications, supplements, food and nothing has given me results achieved with reishi mushrooms. I stopped for almost 90 days with zero regression in improvements. I do know they are really potent and experimented with dosing in soups and found some pretty intense variations. I was amazed at the latest study that claimed they improved the efficacy of chemo/radiation and lessened the side-effects of chemo/radiation. It was done at MSK. I have read some studies on motor neuron diseases and reishi mushrooms as well. Not for the weak of heart literally and figuratively. smile


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
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.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jan 2009
Posts: 1,844
EricS Offline OP
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I'll look into it, thanks Ed. I love that type of research and MSK is a great facility with a solid reputation, I look forward to the read


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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Eric,

WOW! Thanks for the info. It may be implied but can you confirm that whey protein concentrates and isolate all contain sufficient BCAAs for optimal protein synthesis?

Is there sufficient balance in the whey protein concentrates that there is not much need for additional supplemental AA? I see L-Glutamine all the time, L-Leucine not as much. Is it usually part of the BCAA complex and no need to worry about finding that specific AA to add?

I use an amino acid supplement powder mixed in water that is quite smoothing so I am using that as a sipping liquid throughout the day, sound OK?


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
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EricS Offline OP
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Don, I think your question is really too generalized to answer my friend as I can't, nor do I know anyone that would know the specific leucine content of every whey product on the market. Also consider that age, sex, activity levels, lean body mass percentages etc are all going to be a factor of how much protein/leucine is needed. Everyone is going to be different.

So I will give you information from both Drs Layne Norton and Donald Layman, PhDs that have been published in the Journal of Nutrition on the subject of leucine and protein intake.

"While the combination of high-frequency stimulation and growth factors increases protein synthesis postexercise, synthesis is not fully stimulated and skeletal muscle remains catabolic without supplemental dietary leucine, either alone or as a part of protein or an amino acid mixture. Supplemental leucine allows for the muscle to achieve maximum protein synthesis and anabolic recover"

"Carbohydrates, nonessential amino acids, and other essential amino acids do not have stimulatory effects on protein synthesis when compared with leucine. However, in most cases, the combination of amino acid supplements with carbohydrates produces additive effects on the stimulation of the PI3-kinase and mTOR pathways, producing the maximum rates of protein synthesis during recovery"

"The impact of supplemental amino acids and carbohydrates on muscle protein synthesis was further evaluated by Volpi et al. They reported age-related differences in how subjects responded to protein and carbohydrates. In both young adults (∼30 y.o.) and older adults (∼69 y.o.) supplemental essential amino acids produced an anabolic effect on muscle protein synthesis. Further, combination of the essential amino acids with carbohydrates produced an additive enhancement of muscle protein synthesis in the young adults. However, in older adults, addition of carbohydrates (producing increased plasma insulin) eliminated the anabolic effect of supplemental amino acids. These authors suggested that the presents of carbohydrates in nutritional supplements may impair the anabolic effect of muscle protein synthesis in older adults."


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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Eric,

Those articles were what got me thinking about amino acids and their ability increase protein uptake. What about more general question like, "Do you think drinking amino acid supplement during the day, between protein shakes, would likely help protein synthesis or just wasting my money and just as good to drink plain water?" :-)

One other question please. Does BCAA naturally exist in the whey protein or is it usually added as a supplement to the basic bulk whey protein ingredient?


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
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EricS Offline OP
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Don I don't think you're wasting your money on supplemental BCAA's nor would you be wasting it on a whey or any other protein supplement for that matter (I'm not a fan of Soy by the way).

When you think about those of us that are recovering and fighting the long term effects of radiation and our increased need for building blocks, supplementing just makes sense, especially when you consider the intake challenges most of us face.

Getting over 1g of protein/lb of body weight is a steep task via whole foods that even someone without the swallowing issues most of us face would have issues keeping to. I know I've tried it.

I truly believe that "proper" nutrition (not the latest diet fad) is the key to not only recovery (as I think I'm a great example of) but also in our longevity after our cancer ordeal. Always make sure you check this with your physician prior to making any diet changes.


All essential amino acids and BCAAs and will be in a complete source of protein, like Whey, Egg, animal, soy, and other "complete" proteins.


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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Eric,

[quote]All essential amino acids and BCAAs and will be in a complete source of protein, like Whey, Egg, animal, soy, and other "complete" proteins. [/quote]Good to know. So, I will keep looking for any general breakdown of say whey protein isolate and its natural BCAA components for tracking purposes.

My son has some good amino acid supplement that I will use in liquid form in my daily water for consumption throughout the day.

This combination will ensure optimal protein synthesis and uptake.

Now, I need to go back and adjust the quantities in the primary protein shake to account for at least 1g/lb. Lastly, I'll need to recalc the amount of maltodextrin and other (complex,simple) carb to get the total caloric daily target.

Sound like a plan? I need to get this done; otherwise, I continue to wilt away and the docs are going to PEG me if I don't keep the weight on. LOL


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
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Posts: 1,844
EricS Offline OP
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Don,

There is a free app for smartphones called "Calorie Counter" by Fatsecret that I use to track my weight, caloric intake, macro nutrient breakdown, and calories burned. If you don't have a smartphone then hit their site www.fatsecret.com.

This makes it easy to keep your goals in site and track your progress.

Keep pushing forward my friend

Eric


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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Don,
how often are you eating? I had to 'remind' (aka, nag) my husband to do his lunch protein shake for several months. Tracking online could be useful, too.

When you are up to it, and have a REALLY good blender, you can include raw apples (minus the core) in your shakes. My husband adds cinnamon and cloves to these and they are surprisingly tasty.

Best wishes and take care so you don't wither away OR get 'PEG'ed.
Maria


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, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
EricS #164908 05-14-2013 11:10 AM
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Ditto!

Eric, you are the nutrition guru so I am watching for your posts too. So sad to look Old Frack, I think of him a lot, especially around recipes for some reason.

Do you happen to have a sorted list and suggestions for adding sweetness to a protein/carb powder mix?

I'm a bit stuck on what to use. Obviously HFCS gives the highest sweetness kick with the worst release rate and lack of nutritional value. Maltodextrin on the other hand is good for even breakdown into simple sugars but is marginal to add any decent sweet kick. I have recently come across stevia, any opinion on this one? 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
EricS #164919 05-14-2013 03:05 PM
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[quote=EricS]You bet David. I'll start writing it today and we'll get it posted. I've been working with a couple of guys with Doctorates in nutrition and Physical Therapy on these thoughts and we've got some great material to help patients in treatment and then recovery after.

As I do not want to hijack Jim's thread I won't answer any nutritional questions here and will save it for my own post. This is Jim's thread for Jim in dealing with his diagnosis and an opportunity for us to show him love and support, so that's what I'm going to do.

Let us know your results from your appointment my friend, looking forward to it. [/quote]

Ok...hijacking but only temporarily. smile

While you are doing this please look into the lipid connection for nerve damage. I got down to 5% body fat and they had to put me on methadone for several weeks because of intense nerve pain head to toe. For ALS patients it is imperative to keep lipids coming for comfort and slowing disease progression. We hear low fat no fat all the time but the truth is we really need the fat. It is just hard to find healthy fat.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
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.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
PaulB #164920 05-14-2013 03:10 PM
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[quote=PaulB]I assume it's BOT or Tonsil? Speaking of eating all you can eat unnecessarily prior to treatment, just to bulk up, I read excess nutrients can also feed and progress cancer. On the other hand, I basically live to eat, and ate most foods on my bucket list before starting treatment knowing I wouldn't taste much in a while, and making up for every meal I missed for the past 3.5 years lol, but 95%, if not more, what I eat is home made, fresh. Good luck.

"High levels of cellular nutrient metabolism result in ROS production and oxidative stress that can contribute to the development and progression of cancer..."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3190402/ [/quote]

Oxidative stress is one theory on post radiation lower motor neuron disorder. Martin Pall a biochemist from Washington identified what he has dubbed the NO/ONOO cycle. He along with others believe not addressing the oxidative stress can create a cycle that becomes chronic and not reversible. It is believed to be tied to CFS, PTSD, FM, post radiation issues and a few other inflammatory type diseases.

http://thetenthparadigm.org/otherdiseases.htm


Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
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.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Uptown #164941 05-14-2013 05:25 PM
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Thanks, Ed for the added info.


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






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