Max,

My husband make it through without a PEG, it was not easy. He has lost around 50 pounds, fortunately he had the weight to spare.

It was difficult for him to eat from mid rads tx on since food tasted lousy (almost nothing tasted good) and his throat hurt but he was able to tolerate cream of wheat and ScandiShakes. Like Gary mentioned above, we bought ours through ebay and since there has only been one person selling it that I have seen, it must be the same seller. She has a great price on them and is a pleasure to deal with.

Hydration is very important and until toward the end of rads tx he was drinking about 2-3 liters of water a day. At the end he was taking in almost nothing because it hurt. One of the rads docs recommended that he switch over to Gatorade or the like because it is not as hard on the throat as water can be due to the minerals in the water.

Gordon did well with the Gatorade for about 10 days but then the flavors started irritating his throat. It was then recommended that he drink chicken broth. I think it has something to do with getting sodium to the heart??

Finally, it just got to a point where he was getting hydrated at the infusion center which was not a bad idea because they always added Decadron which helped with the post-treatment throat burning that we were warned about.

Anyway, he is now 2 weeks post treatment and his throat has improved enough that he is taking fluids easier these days. There is hope, it does get better. It takes some time but it does get better.

Remember, hydrate, hydrate, hydrate!

Stay strong, Norma

Max if you are out mowing I hope you are wearing a hat with a big brim and/or a ton of sunscreen. Just remember you are getting all the rays you need in the radiation room this year and you should be careful about getting any more outside......

hang in there!

Nelie

I'm just barely ahead of you on the treatment schedule. Today will complete 3 weeks of radiation for me. I have the same problem - everything tastes horrible. I can still eat yogurt - while I don't taste it much, it at least doesn't taste 'bad' to me like everything else. Primarily I am getting my nutrition through my PEG tube. The PEG is a lifesaver because I can't get enough yogurt in to be a healthy diet by itself. Like so many others have already said, I highly recommend the PEG. Works great for me.
-Steve J.

Thanks for all the responses. Here are answers to some of the questions:

I am being treated at St. Joseph Hospital in Kokomo, IN. They are a CCC center.

Yes, I do wear a wide brimmed hat and sun screen.

I am still able to eat some. I am watching my caloric and protein intakes to make sure I get at least 2500 calories and 50g of protein each day.

The doctors seem to think that Ensure will care me if I can get four to six of them down each day.

I only have fourteen more treatment days (I get the weekends off), so I am hopeful that I can continue without the PEG

My weight was 186 when I started treatment. I tried hard to gain weight the first week or two and got up to 194 but I am down to 190.

Max,
you're doing really well, 4 lb weight loss is nothing. They don't even start getting nervous until you've lost at least 20. I didn't have a PEG and lost over 60 lbs, 30 of which I left behind which is fine with me. I forced myself to eat and mainly lived on Carnation Instant breakfast (it has almost that same amount of calories as Boost) and Hagen Daz milkshakes (sometimes I would add heavy cream and/or a package of instant breakfast to that as well. Experiment with different flavors. It got rough in the end and I used a lot of narcotics to numb the pain for eating and drinking but I kept my swallowing mechanisms intact and was eating regular food about 3 months post Tx. Strangely, some things I could still taste - not many though and it's wierd being able to smell something and not be able to taste it. It was one of the worst things about the treatment for me - I love food and eating. It doesn't have to be inevitable to get a PEG but you have to be totally committed to toughing it out and many can't. The pain can be very extreme and the surgery (if you had it) may also play a role (which I did not have). It sure got boring being on a liquid diet for so long and it sure didn't help the constipation issues (Norma posted some great suggestions on that issue in another section of the forum). It took almost all of my waking energy each day for the eating and drinking process. I would watch my wife chug a bottle of water and was green with envy.

One word of caution though - when your throat is really burned and blistered the slightest amount of acidity (even from the mildest and diluted juices can burn like hell). Saline mixtures can have the same result. I had one book recommend a technique to make a salt water rinse - very diluted - and I couldn't even tolerate that.

I couldn't stand Boost and Ensure - gagged me, but some here love it. I heard the trick if you are taking it orally is to be sure it's good and cold. With a PEG it's probably better at room temp. Eating first thing in the morning when there is a lot of mucous buildup it is risky for the gagging issue. I would wait a little while after arising and maybe be on your feet a little while before trying to eat or drink. Timing is everything.

I also used a humidifier, slept propped up a little and constantly had a water bottle present - room temperature is best for the water. Carbonated water can help if you can tolerate it. I ALWAYS used a straw as well. Be very careful while eating and/or drinking not to aspirate into your lungs - you can develop pneumonia from that. Small bites - small sips. Experiment with different viscosities.

Talking about timing, when you take showers, or anything that requires energy, that has to be carefully planned out. I found that I had a spike in my energy level in the early afternoon so that's when I would shower each day. Energy management is critical especially when your caloric intake is at the bare minimum.

2-3 liters of water is equivalent to 4-6, 12 oz bottles of water a day - but remember that there is water in food as well and that also counts towards the total fluid intake. As Norma also said, stay hydrated, especially if you are taking chemo. It will lower the toxicity to the kidneys. Anti-acids will help also, like Pepcid AC (Famatodine). Joanna recommended "Puffs" brand tissues for the mucous as well. Some have had success with suction machines.

Yogurt, with acidophilus in it, can have additional benefit with helping reduce the thrush problem but your mouth chemistry from Zerostomia will be really wacked out for a long while and conditions for yeast infections will be optimal.

You are wise to keep a log of your food and water intake each day.

Thanks Gary (and everyone else).

I am not doing chemo. They believe it is all confined to the tonsil. I am doing IMRT. They focus on the left throat area and the nodes near my collar bone on the left side.

I don't really like the Ensure, but I have to do whatever I can to get through this.

I find it easy to get discouraged, but this forum always seems to help that. It sure helps to have people who have been down this road and who are willing to give me advice.

Thank you all!!

Max,

Like Gary, I discovered early on in my treatment that I didn't really like Ensure, so I switched to Carnation Instant Breakfast and did much better with that. I frequently put it in the blender with other things like fruit and ice cream to add calories and variety. I also ate lots of baby food, pudding, applesauce -- just about anything that falls into the category of nutritious and easy to swallow. Most things tasted terrible until well past the end of radiation, but I thought it was a small price to pay under the circumstances.

Cathy

Here's another vote against Ensure. Just don't like the consistancy or something about it. I found Boost a bit thinner and easier to get down. But, liking the Scandishakes the best mainly because you get DOUBLE the calories, etc....so only have to endure HALF as much.

I'm still looking and looking for something sort of solid I can get down once a day to try and keep giving my swallowing function something to do. I've been experimenting with various 'frozen dinner' entries that are kind of soft and mushy as possible. I found one today that wasn't too bad which is... Michelina's Cheese Ravioli in Alfredo Sauce. Small portion...about 450 calories and nice and slip slidding stuff that slid down fairly easily. And, the best part, didn't totally taste terrible like most things do.

I'm still looking and experimenting daily on the food thing. Just don't want to totally give in to the liquid diet just yet.

Max,
Try the Ensure Plus. It's 350 calories. The more calories per swallow the better. I'm another of those pegless wonders who only lost 4 lbs and lived on Ensure Plus for several weeks. Coffee and butternut were my favorite flavors, ice cold. I now like vanilla which I don't think I even tried back then. Danny has a great recipe for a 1300 calorie shake which a search of this site should find it. If push comes to shove, there is always the nasal feeding tube if you only need it for a few weeks and still against the peg. It ain't pretty, but it works. I had one after larynx surgery for about 8 days. For that you don't want it ice cold.

Hang in there,
Eileen

Did anyone have trouble sleeping? I cannot get to sleep and when I do, I wake up in a couple of hours. I am taking Ambein, but it doesn't have any effect.

I would think that the morphine would make me sleep but no such luck.

Just wondering if this is common.