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#146981 - 03/09/12 06:46 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Brenda,

You've gotten very good advice, especially about the VHC and Protein powder from Christine. VHC is "fantastic" as it not only is high in calories but it's fat/protein/carb makeup is in what's considered the "Golden Ratio" for your dietary needs (20-30% fat, 20-30% protein, 40-50% carbs) and this is very important. My only emphasis would be to supplement your protein as Christine suggested and here's why.

Here is a link to an interesting article from the National Institute of Health on Cachexia, or cancer induced weight loss.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2311497/

Interesting excerpts:

"Wide alterations in carbohydrate, lipid, and protein metabolism in the tumor-bearing host have been previously documented. Cancer anorexia/cachexia is characterized by a shift in nutrient use from the growth and maintenance of muscle mass to processes that support the immune response and affect disease resistance [6]. These changes can result in an increased rate of muscle protein degradation and increase in acute-phase protein synthesis, with progressive depletion of lean body mass, with clinical evidence of cachexia. As a matter of fact, the majority of cancer patients experience weight loss as their disease progresses and in general weight loss is a major prognostic indicator of poor survival and impaired response to anti-neoplastic therapy."

And

"Cancer induced weight loss (cachexia) is a complex, multifactorial syndrome that results from a reduction in food intake, a variety of metabolic abnormalities (including hypermetabolism) or more often a combination of the two."


This particular article had to do with Omega-3 Fatty Acids (Fish Oil etc), and where I haven't seen anything conclusive in those studies it really did emphasize the need for protein and nutrients during treatment. Whey Protein has the fastest uptake of all protein powders and is what I would recommend, unless you have dietary objections (vegan/vegetarian).

Nutrition and hydration are vital and thankfully one of the things you can control during this process. I wish I'd known more about it through my ordeal, but I wasn't fortunate enough to find OCF until well after treatment and surgery.

Keep your chin up

Eric


Edited by EricS (03/09/12 07:17 PM)
Edit Reason: always spelling
_________________________
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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#146984 - 03/09/12 08:22 PM Re: Treatments beginning. A necessary "evil" [Re: Maria]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi Brenda,
Are you going this alone? I mean, besides all of us, of course! ;o)
Also, I will tell you that Kevin lost about 56 pounds total throughout tx. MOST (35)of that was after the 3rd week of radiation. He drank 2-3 Ensures, had 1 milkshake a day, plus ate lots of eggs and oatmeal the entire time, but I don't think it was enough claories. He actually loses really fast even now if he doesn't keep up his calories. He has been losing/gaining about 8 pounds for the last couple of months.He has been overweight for 25 years, so losing doesn't come easy for him. This was all tx. He just got home from Alaska and was down the 8 again. He will gain some of it back the next 19 days, but then he's off to work again in the great white north for 3 weeks. They have tons of food there, but he just doesn't take a lot of time to eat much. He's a perfect weight for him now though, so I think he's trying to maintain.
Just some "food" for thought!!
Oh, we also used the Silvadene (sp) cream. GOOD stuff. It goes on the burns once they start.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#146985 - 03/09/12 08:25 PM Re: Treatments beginning. A necessary "evil" [Re: EricS]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 869
Loc: Ohio
Thanks, Eric - really interesting article. We are now whey powder fans, too.
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#146992 - 03/09/12 09:05 PM Re: Treatments beginning. A necessary "evil" [Re: Maria]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Maria,
I make my own smoothies in the morning...frozen blueberries, banana, frozen pineapple chunks, whey protein, ground flax seed, Greek yogurt and green tea for the liquid. I would love recipes for other shakes and smoothies that would "work" for lunch and dinner because I know in a week or so liquids will be it.

Thanks for the offer of recipes! New ideas are always welcome!
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

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#147000 - 03/10/12 01:19 AM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8322
Loc: PA
Brenda, as the weeks go by your nutrition and hydration will be more and more important. No matter how lousy and miserable you feel, you MUST get your calories and hydration every single day. It is NOT optional! Well, I should say if you want to avoid being hospitalized then it is mandatory. I have warned so many people about this over the years and some get it but others just cant get there. Every one who cant quite make it every day with the minimums will end up in the hospital, every single time. I know I sure did, a few times. So Im really glad you learned this before it became an issue. This will also help you to feel better than many of us.

I wanted to ask you if you had someone helping you there? Do you have someone to drive you to treatments? If you need help, call the American Cancer Society. They can help you with providing a volunteer driver at least some of the days. You will need to get a form filled out by your doctor. Its a great help when someone is very ill and their family needs a break. I am one of their drivers. I try to make time for at least one day per month to take someone to their appointment. Also think if anyone offered to help you. Hope you wrote their names down. Dont be proud, people really do want to help so if you need help, ask. Wouldnt you help someone if your friend was sick?

Hang in there, you have a whole new online family ready to help you get thru this.
_________________________
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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#147016 - 03/10/12 03:46 PM Re: Treatments beginning. A necessary "evil" [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4847
Loc: Toronto canada
Hi there . I'm the local veg head so I avoid whey and soy (far too maipnulated these say) however - in the morning, I blend - 4tbsp of cottage cheese + 2 of flax oil (refridgerated - otherwise it becomes rancid quickly ) once it is blended into an almost creamy texture I add 1/4 cup of fruit smoothie - they sell it in a bottle 100% fruit no additives - usually do the berry mix, but sometimes I switch it up, then I throw in 1/2 cup chocolate unsweetened almond milk, 1/2 reg unsweetened almond milk (two different brands - I would use only the chocolate but the original brand is thicker and creamier which I like), then I toss in two scoops of protein Powder - both vegan both soyless, one is a chocolate rice protein with an 98% protein Uptake - the other is a combination of hemp, chia, rice, and pea. It's vanilla flavored as they don't offer it in chocolate both are very smooth not gritty like some powders (and both are sweetened with stevia no sugar, then I add half a banana and frozen strawberries or mixed fruit depending on the smoothie juice I use and it's great! For an added nutty taste (but more grit) grind some flax and toss it in. Its low glycemic - high protein 46 - 54 gms - mild tasting - has over 400 calories and fills me until after lunch... Yum... wink. Ps there's a web site run by a former member - it's free to cancer patients and tube feeders - its called drink your meals... They have some decent recipes. Take care and you'll get through it!! If you want the protein and smoothie brand names I used pm me. I experiment on myself and am super fussy about taste and texture and there are some out there that are just plain gross. wink


Edited by Cheryld (03/10/12 03:50 PM)
_________________________
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

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#147114 - 03/14/12 06:53 PM Re: Treatments beginning. A necessary "evil" [Re: KP5]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Thanks for asking. No. I am blessed and not going through this alone. Husband is very attentive and supportive. I am able to eat eggs, chopped salads and a few other solid foods. Otherwise it is cream of wheat, oatmeal, smoothies that I make and pureed soups that I make. In 3rd week of Erbitux. No mouth sores yet but sensitivity is starting. Using baking soda/salt rinses several times per day. Things are progressing and thanks to everyone here, I know to expect the upcoming worse days. Not looking forward to it but it is a process.
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

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#147118 - 03/14/12 08:31 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 869
Loc: Ohio
Hi, Brenda
Glad to hear your husband is there to help you. Cheryl has given you some great ideas on things to add to smoothies. Just a couple more ideas:

As swallowing gets more difficult, both texture and acid content may bother you more. Baby / toddler cereals are very smooth and mild for adding calories.

Canned peaches were the easiest fruit for my husband to tolerate at the worst of the radiation.

Everyone is different - chocolate is only just now tasting almost right to my husband. Since you cook from scratch, you will be better able work out food that is, if not tastey, at less annoying. When you develope or purchase a good standby source of nutrition, make sure your husband knows about it AND how much you should be having every day. As Christine pointed out already, the key to getting through this without too much drama is nutrition and hydration. My husband worked through most of his treatment, and I would call him every day to remind him to drink his protein shakes!


Edited by Maria (03/14/12 08:42 PM)
Edit Reason: more details
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#147168 - 03/15/12 07:40 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
Michelle Ann Offline
Senior Member (100+ posts)

Registered: 01/17/11
Posts: 168
Loc: Massachusetts
Hi Brenda! I struggled with mouth sores during my treatment and recovery and even after one year my mouth is far from completely healed. Magic Mouthwash was my friend during treatment, as was this mix of baking soda and salt (not sure exactly the measurements; my dentist recommended it). The magic mouthwash gave me relief during treatment and recovery. I was told by a member here to try manuka honey to help heal sores but it didn't work that great for me - mostly because lozenges were hard since they trickled down my throat and caused choking. The best advice I ever got was to buy a Water Pik. I have used it faithfully, daily and then some, since last February, when I was in the middle of treatment. At that time, I could only use it at its most gentle setting because my mouth hurt so much. But it managed to keep me clean and is probably the reason my dentist said she never saw a head and neck cancer patient finish treatment with a mouth in such good shape. I so feared losing my teeth I became pretty obsessive about my mouth. The Water Pik also helped my mouth to feel fresh, even if it never lasted long during the worst of it. I would and still do put Biotene mouth wash in with the water. If I think of more tips, I will post again. Wishing you the strength and patience to get through this. You will. -Michelle
_________________________
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.

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#149372 - 05/10/12 04:04 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Great news! Last Erbitux April 19th and final RAD April 23rd. The discomfort and pain were so intense from about March 19th until now, I just "shut down" and "went inside myself". I cannot explain but in difficult times I reach deep down for my soul and try to be outside the body. Anyway, I am finally able to feel the body and soul! Except for some of the extremely severe radiation burns that remain around my entire neck requiring Silvadene and wrapping, I am gaining energy. Taste still does not exist but appetite is returning. Mouth still burns in a few places. Erbitux rash is almost clear. Weight is stabilizing (I only lost about 5 pounds but was very focused on calories early on).

Bottom line is I am almost ready to say I am post treatment. PET scheduled for May 21st and I pray it will be clear then and for years to come. Thank everyone here for your suggestions, advice and prayers! Knowing some of the challenges to expect helped tremendously. Advice like Manuka honey, salt/baking soda water rinses, water pic, drinkng lots of water, carnation VHC drink and making myself rest in bed practically 24x7 are some of the best advice followed which I am sure helped. Perhaps I can now help others get though this and similar cancer challenges. This cancer, is ever is o very horribly due to the location and side effects. I cannot thank you all and the creators of this site enough! I can finally see some light and I pray it is not a fright train. You all are the best!
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

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