Well, I sent a few messages as intros. Surgery is complete. It was very difficult. PEG and Trach. But it was only for 8 days so not as long term as the upcoming 7 weeks of radiation. However, healing from the surgery is good. But this Wednesday (3/7/2012) is four weeks out and I will begin radiation and last week Wednesday (2/29/2012) received the initial Erbitux megadosing. Weekly Erbitux begins 3/8/2012). I am not looking forward to it given the many comments here. But I do know what to expect. Expectations, however do not eliminate the fear of the dreaded side effects. Does anyone have advice on dealing with the mouth sores so weight can be maintained? Any other advice on nutrition? (after surgery we made soups and i blended them to liquids and supplemented with homemade smoothies and Boost) Does anyone have successful treatments for the Erbitux rash? Does the product Proactiv work?

We didn't do much to the rash until it got dry. Then we used Aquaphor ointment. If you are starting radiation though, be sure NOT to put it on before tx.
Be sure to have the BMX mouthwash and do peroxide/water and salt water rinses a few times a day at different intervals. The BMX helps to do just before you consume anything. It just makes everything numb for a bit.
As for the mouth sores, just watch for thrush. Otherwise ride it out with the BMX, rinses and pain meds.
These are all things we did. I'm sure others have their experiences too!
Sounds like you were amazingly prepared food wise!! Good job. Scrambled eggs sometimes work because they slide down pretty easy. Just try for the 2500 calories a day.
You have a great grasp of what is happening. Keep in touch.
Kathy

Hey Brenda. I'm a Missouri native myself! Weighing in as a caregiver, for what it is worth. My husband didn't have surgery or Erbitux so don't know anything about that. He finished rads Feb 10.

Nourishing yourself IS a high priority. This is really Christine's topic and it comes up with every new person she responds to. And Christine, if you are reading, I don't see evidence that you repeatedly copy and paste -- it is part of your kindness to speak to each of us individually.

Mouth sores are addressed in many places on the boards but some of the themes are using Magic Mouthwash, careful attention to food choices (textures, acidity, altered taste), liberal use of pain meds. Do not, and I repeat DO NOT slack off about oral care, no matter how unpleasant. I'm talking about the antifungal stuff and sodium bicarb rinses. Plus anything else the dentist and radiation oncologist would have recommended to you. Rick was slack and wound up in a world of misery from little old thrush.


Nourishing yourself is going to be hard work. There is simply no way around it. Use your PEG. Rick's has been his best friend and worst enemy but it is literally what keeps him alive. He tried to battle on eating and resisted using the PEG until it was a last resort. Why? (Wife beats head on wall.) Well, PEGs are great but they, or the formulas that go through them, create issues of their own. Indigestion, nausea, etc. But the calories have got to go in some way. Please don't let yourself give in to missing out on calories until you have exhausted ALL options. You get one and only one chance to heal.

Understand that the ground will be shifting under your feet for the next few weeks. What works one day won't the next. Frustrating but true. Still, you can do this. Not a single person on these boards has any Superhuman power and if this collection of ordinary people can do this extraordinary thing, then so can you. And you will. All the best, Brenda N.

Brenda, you might also get a prescription for viscous lidocaine. I recommend that a lot because I found it was the only thing that would numb my mouth enough to allow me to drink anything, even water. There are also other oral rinses, Caphosol is one but as I recall it's very expensive. Baking soda and water are great though.

When the burns on my neck got to a critical stage and Aquafor was only partially helpful I found the best thing was silver sulfadiazine. It's a thick white goop that really did the trick for me.

This is a tough battle but you sound like a real fighter. Keep yourself fed as much as you can. I didn't get a PEG and wish I had, so you're ahead of the game there. And keep drinking tons of water as well.

We're all here for you all the way!

Ask your docs for prescription creams. I have used the silver sulfadiazine too. It works very well as does Beta-Val prescription cream. I would not use Proactive on a chemo type of rash/burn. When using the creams, dab them on and let them soak in. Never rub them into your skin as it is very sensitive right now and even lightly rubbing cream into your skin could irritate or tear your skin.

Check out the list of easy to eat foods. Right now its most important for you to get a minimum of 2500 calories daily with 48 oz of water, more is even better! Do what you have to so you meet this goal every single day. You can not skimp one day and make it up the next. When you are trying to heal from treatments, I would really suggest pushing for even higher calories like 3000 - 3500 a day. Carnation Very High Calorie can be purchased by using the green Amazon box near the top of the main forum page. That helps OCF to continue to operate by giving a small kick back from any Amazon purchase. When I used Carnation VHC, a case was around $46. They are 560 calories per can so it helps to get your daily needs easily. Also get some high protein powder (available any drug store or thru the Amazon link). Add that to your liquids, if using a feeding pump add a can or 2 of water when using thick formula like Carnation VHC. The extra protein is needed to help with your healing, your body has been thru heck and it will take alot of work to bounce back.

List of Easy to Eat Foods

@lam, you are right, I dont cut and paste my replies. I think it would take twice as long to research the question/answers and then move it over to another post.

Best wishes with your continued improvements!

Kathy,
Thank you very much for your reply. I was able to request the BMX mouthwash this week. No mouth sores yet but today is only RAD treatment #3 and I wanted to be prepared. I have also needed Aquaphor already due to the dry skin on my chin. Rash is getting worse but I knew that going in.

Thanks to you and others here, I am able to better know what to expect. While the side-effects cannot be avoided, your responses help tremendously.

Just a thought......Given all the cancer treatment centers, it is almost like "they" know the many environmental, food and other related causes of cancer (not just genetics) but cannot eliminate them without major economic disruption so "they" have resigned themselves to creating "treatment" factories. (Infusion centers, RAD centers, payment centers, etc). Guess the cost of "advancing civilization" requires sacrifice compared to "natural" environments.

Wow! I appreciate you taking time for a response. I am working on nourishment and not looking forward to the next 5 weeks. But one week is already done. Thank God.

From your advice, I started the salt/baking soda rinses and do it every 1-2 hours. The "magic mouthwash" was requested and I will get that prescription filled this weekend.

My world will never be the same! Health is a blessing and I will always be deficient from this point on. Those people complaining about Wall Street need to get a life and be grateful for their health! If they don't like Wall Street, their jobs, their bosses, then just create their own business with their healthy bodies and the freedoms they have! Why complain about others? Use their blessings to produce! Doesn't one of them have the cure for cancer?!!!

David,
Thanks! You gave me another piece of advice I had not previously heard about....silver sulfadiazine. I need to find out more and ensure I have some on hand!

So far, I have received some great hints/advice:
Aquaphor
Silver Sulfadiazine
Instant Breakfast VHC (did not even know they made this)
Mouth rinses
Magic Mouthwash

Plus lots of advice on foods to try especially if one is trying to make it without the PEG.

Thanks to all that actively respond! Your help is appreciated!

Christine,
Thank you, thank you, thank you! Great information and advice from you and others.

Had not heard of the Carnation VHC before. Ordered it on Sunday and it arrived by Thursday! No mouth sores yet but I am working to keep calories high now in preparation.

Your advice about keeping up rather that catching up is great. Otherwise, I would have had the tendency to do that especially on really bad days. Thanks to your advice, I will be sure to trudge ahead even when I am exhausted and feeling sorry for myself (which causes me to lose my appetite).

I will keep updating on anything new that I find might work for me so I can contribute to and help others as you all have helped me. Thank you!

Still in early stages of treatment but better prepared for the worst thanks to you all on this site....... I actually have hope......

Hi, Brenda

On the nutrition side, you may find that making your own protein shakes in your own blender to be more palitable than the canned version. You may be able to do a consult with a nutritionist on this. My husband used the canned products at work, and my shakes at home during the latter half of treatment. Let me know if you want recipe ideas.
Maria

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

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

Thanks, Eric - really interesting article. We are now whey powder fans, too.

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!

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.

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... . 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.

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.

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!

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

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!

Hi Brenda,
That is way quick to have a PET. Just a forewarning....don't freak if it lights up. Kevin's lit up with inflammation and it was 5 months out of tx.
So glad you are back with us!!!
Kathy

Wow! You were right. All the doctors ( surgeon, radiologist and onconlogist) looked concerned because swelling prevented too much from showing up. Oh! I was wrong, it was a CT scan, ot PET. Also, I have lots of swelling on the neck where the lympnodes were removed. Doctors think it is Lympedema. Prescribed a steroid and an antibiotic. Day three the swelling seems to be reduced. But surgeon wants to see me again as soon as possible (the earliet is Tuesday May 29th) today is the 24th. because he is not sure of the cause of the swelling. Now I am quite concerned and have to wait....
Stressed and fearful! How can this be? After surgery, chemo (Erbitux) and radiation for 6 weeks! All this pain for what? Help! How do you cope? I trust and believe in God but it does not make it easier.

It could very well be the swelling - perhaps some lymphatic massage? And if you're still healing it does take a while not to light up, inflammation, and infection an cause a scan to light up, and a neck to swell... Hopefully it's nothing serious. Did they radiate your neck as well? They cooked me on both sides.

It is now September 8th and I am very much improved. Greatful to be alive and on the road to recovery and looking like my "old" self. I have found that each specialist has their own interest and purpose as well as oncern and they will not always recommend holistic approaches like manual lymphatic message ans scar message therapy teamed with exercise. I must let everyone know these have helped my healing substantially! The manual lymphatic message first done by a physical therapist supplemented by me per their direction has substantially reduced and in places eliminated swelling in face and neck! The scar message has broken up the scar tissue I'm my neck where it is barely visible and my left arm (which was used to reconstruct my tongue)! Hard to believe but it really works. Because radiation effects can appear even 5-10 years later doing these techniques myself is a rest of life requirement because I value the quality of range of motion of my neck, arms, mouth and throat. I recommend, if you can, see about PT and/OT within 3-6 months following surgery and radiation. Waiting allows muscle and scar tissue to harden creating a sort of atrophy ( I see other patients with it who have not received therapy on my check ups). Remember, use it or lee it is relevant even after treatment for this horrible life-threatening condition. It seems the surgeon (for whom I am forever greatful), the oncologist and radiologist are mostly concerned with survival and/or reoccurance not reconditioning after they are done with their miraculous work. Respectful of their contributions and totally understand. However, each of us must take care of recovery which includes healthy eating, and as suggested lymphatic message and exercise. Hope this held others.

Acupuncture is great too, helps return blod flow to the areas that have been cooked. I've done physio and lymphatic massage, since 3 weeks post treatment. Good luck

I would not classify either lymphatic massage or scar massage therapy or exercise as holistic if that's meant to include nonconventional or alternative medicine. Those used in conjunction with recognized medical standards in the Tx of oral cancer can be most beneficial.

Understood! You are right about that. Since those involved in my conventional care were not really supportive about even PT etc, I extended holistic to those because they were not surgery, chemo or rad. Those professionals of mine said believe that you just give the body time and all will be well in 5 years. That is not true! From this site and others as well as looking at their "long term" patients indicate that the side effects such as fibrosis, stiffness, swelling, impact to range of motion to name a few will get worse without other alternatives beside just waiting. However you are technically correct. Professional and self lymphatic message and scar message are hardly holistic.

Brenda I am glad to hear that you are doing better, I have severe lymphedema and see my PT once a week for lymph channel massage. She has ordered a compression garment for me. I don't know how bad your lymphedema is but thought I would mention it. I too preform the massages at home. But seeing my PT is a treat because she seems to do it so much better than I. My Neck dissection being preformed on irradiated skin and only a few months between Rads. and surgery is what I think is the main reason that I have developed severe fibrosis that started at the insision site. And My PT works for Kaiser. So agreed about this treatment that in my opinion lymphatic massage is slowing the progression of both fibrosis and lymphedema. These conditions are progressing in me. You mentioned steroids. No one on my team recommended it. How helpful was it to you Brenda? I don't know where your at with the Erbitux rash, But my MO did recommend traditional acne treatment for it. Oxy max. action face wash did wonders and very quickly at that. I am not a dr. And I know that your team did not recommend this treatment. Just to let you know what worked really well for me with no side effects. But is very drying so I only leave it on for half the time it recommends. Its only been about a month since my (unsuccessful) surgery. And do hope that this at least stops where it is, even if there is no improvement going forward. I am glad that your situation is not as advanced and aggressive as mine. Just wanted to reinforce what you already seem to understand about these conditions. And I apologize because I just realized that I kinda hijacked your thread. But again glad that you can see the light at the end of this tunnel of hell! Sincerely Shawn U.