Great attitude! Control and knowledge are powerful tools to manage your journey through treatment and recovery. I despised the idea of PEG did not get one in and survived without it. My own belief is far too many just go and get a PEG without even working hard to consume orally.

The team approach is powerful and confidence building. When I read up about the team approach and learned about tumor board I immediately asked to join my oncologist who was presenting my case. It was an incredibly reassuring experience to hear a dozen or more doctors all focused on the specifics of your case, reviewing and discussing the details, hearing the different opinions, then a consensus on the recommended plan. I never lost any sleep wondering or second guessing any of those diagnosis or treatment decisions.

Yes, I agree, great attitude, one that will do you well throughout your treatment.

I was lucky enough to not need a PEG tube. Having about 30 extra pounds at the start of rads I had plenty of extra weight to lose. And I lost all of it (plus 10 pounds more after treatment). I say this because every week when I saw the dietitian she would fuss at me for continued weight loss and then remind me that when you get to 10% weight loss they give you a PEG tube. I reached 10% (23.2 pounds) on my last day of treatment, so I dodged the tube.

You may already feel this, but the reason I had so much weight loss was not oral pain, it was complete loss of appetite. I had to force down 5 Ensures per day (and the RO wanted me to drink 7). That loss of appetite thing is a biggie, I could easily go a whole day eating nothing. I didn't ever do that, but there were more than one day I didn't eat much. Weight loss under those conditions is easy, too easy.

I don't know where you are in treatment, but if you're early in that phase, try to choke down some more food, because you won't want too later.

take care, keep fighting, but please, driving down 125 ... keep your eyes OPEN. (LOL).

Tony

Day one after Cisplatin and I'm feeling pretty wrecked. The nausea is pretty incredible as is the acid reflux created by, I suspect, the steroids they're using for anti-nausea. Two rads in, no major issues ther (yet) so that's good.

Tomorrow the Cisplatin hangover is supposed to be at its worst, or maybe day 3. One way or another, I will need to eat tomorrow. Barely ate today but drank probably about 60 oz of water and ginger ale. This nausea really sucks.

Hanging touh but hating how I feel, I'm going to try and get some more sleep and hope for the best in the morning. Maybe I'll get my nausea out of cycle and tomorrow or Sunday will be better!

Gotta say, giving cancer the beat down is not a fault free process. I think I might switch careers to chemo research -- there has got to be a better way!

Anyone have any anti-nausea recommendations? I have been doing ginger ale and ginger candies in conjunction with antacids to control some of the most intense heartburn.

The problem, however, is that I feel like I can barely hold down the liquids, to say nothing of eating real food.

Any advice is appreciated -- about 600 calories today which is pathetic, but I held down the water so at least my dehydration risk is low.

The Hellion

I wish I had some advice for you, but I didn't do chemo. Still, you are "doing the dance" beautifully, whatever it takes to get through today, one hour at a time if necessary.

You are doing the best you can today, that's all anyone can ask for. 600 calories may not seem like much, but it's way better than zero, which is what you would likely have done if you had just given in and given up.

Keep fighting Hellion, we win this battle one day at a time. It may not happen tomorrow or this week, but it will get better.

Tony

Get some good anti-nausea meds like zofran and take it like clockwork for the next week. Dont get lulled into thinking its ok to skip a dose as playing catch up never quite works out how we want it to. Remember, everything that comes out must be put back in.

During treatments and the first year afterwards you must get a daily minimum of 2500 calories and 48-60 oz of water. I cant stress this enough. Your intake is what will make or break you in this. Its also one of the few things you have control over. As you continue, it will get progressively more difficult so get a hold of this now while you are just starting and it will be easier.

Drink your calories if you must, just get them in. Here is a recipe for something I used to make and drink when I went thru treatments. The list of foods might help you also, they mostly have a smoother texture and arent spicy which should be easier to tolerate.

Easy to Eat Food List

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.


Best wishes!!!

Also see a nutrionist or designated healthcare professional at your cancer center, most comprehensive ones have one to go over your nutritional needs before, during and after treatment. Here is an USDA interactive guide that is used by healthcare professionals for your daily required intake based on sex, age, height, weight, activity. These could be more or less based on other medical conditions such as treatment, surgery, recovery, illness, but gives you an idea. Most will be surprised water requirement is more than what one would think, drink, and basically comes down to 1/2 ounce liquids for every pound of weight, plus more for activity, elevation, humidity, etc. Mine is about 128 ounces per day on this, and several other water calculators. They say 20% water may come come foods, but the rest by liquids. Protein intake may be higher, some say 1/2 gram per pound of weight, others one gram of protein per pound of weight per day. Water helps flush the Cisplatin from the kidneys.

http://fnic.nal.usda.gov/fnic/interactiveDRI/

Ditto what Paul and Christine said. Do NOT be shy about using all the resources available to you!
On of the things that frustrated my husband the most was not being able to do his normal tasks and activities at the usual level during treatment and recovery. Remember that your body is putting a lot of energy into dealing with the treatment itself. Your most important job is to complete the treatment as specified - especially to try to keep to the radiation treatment on schedule and get at least another one of the evil cisplatin bags under your belt. Your body hates it - but the cancer hates it worse!
Best wishes and keep posting. You are helping patients and caregivers undergoing treatment that are not comfortable posting themselves.
Maria

Hellion, I sent you a PM.

Also, I make protein shakes with one scoop of whey protein (I get Vanilla Ice Cream flavor and buy it in 5LB tubs) and one scoop of Carnation Breakfast Essentials.

HINT: I use 8 Oz Cold water in the blender. You can use milk; skim milk has more protein than whole milk, but I use water for less fat. This shake will give you 120 cal from the whey protein and 120 cal from the CBE. Add fruits and berries as you will, or add choc syrup. Be creative.

You will probably lose your sense of taste entirely (temporarily) so the flavor may well become moot.

I tried Boost VHC (500 cal) but it works against me. It makes me trap air in my gut, and the wakes me in the middle of the night with terrible dry heaves to clear the air. I can't belch, an artifact of the radiation to my throat in '09.

Hang in, brother, you'll get through this.

Bart

Bit better today. Feeling weak as a kitten and hating that, but hoping I can get some more food down today. That you so much for your advice and thoughts yesterday!

Hey Hellion,

I forgot to add that in making a blended shake, you get best results when you add the dry powdered ingredients after the blender had brought the liquid up to speed. This way, you will not get any lumps, but the other way almost guarantees that you will.

I keep a small bowl near the blender and measure all my dry ingredients into that. When the blender is up to speed, I rapidly pour the contents of the bowl into it and give it 4 seconds of blending.

More blending time also equals more air entrained in the shake, and that air could cause discomfort later.

Warm regards,

Bart