I am 13 weeks out from Rads and Chemo and had hoped i'd feel better than I do. My bigest issue right now is I am having troble holding down the food that we put (ISOSOURSE) in the PEG tube. We are still using the PEG because I am having trouble swollowing. I am seeing a theripst for that but I would really appreciate any feedback on theses recovery issues. Thanks.

Len

I can't help much on the problem with holding down the food with the PEG tube, in my case didn't get one. A lot of other on this board have and can offer a lot of practical advise.

But, I can offer that as far as feeling better after RAD/Chemo, it just takes time and patience. Rule of thumb here is one month for every week of RAD for recovery. Then you kind of start to feel n normal. I had RAD in April/May of last year, didn't even start feeling relatively normal until around December. And that's not taking into account things like dry mouth, and all those fun other side effects that become a part of new normal.

Good luck on your recovery, things will get better, really they do.
Bob S.

Hi Len.

How are you feeding yourself? I was injecting the Jevity with a 2 oz. syringe. I was able to input three cans plus 8oz, of Gatorade and 4 to 6 oz of water to flush the tube per feeding. I am a small man, 5'7", 145 lbs.

I know you can let it drip in slowly by hanging the bag up and letting it drip in. If not already, you should try the slower method.

Believe me when I say it get's better!!! I had my PEG removed about ten days ago. I have to eat orally now. Each swallow is a thought out process. I learned you have to eat moist food. Followed by a slug of water, milk or whatever to help it slide down, Also I have been eating a cup of vanalla ice cream with fudge toppin every night. Lots of calories and easy to eat. Also try eating soup. Easy to eat and goes down real easy. The biggest prob;em I have with liquid intake is having it drip out my nose. Have allot of napkins ready.

Best of wishes, Your friend, Dan

Hi Len,
Like Bob, I didn't have a PEG tube either but I can tell you that I was never so sick in my life as in the post treatment phase. Whether it was constipation related, radiation sickness, or mucositis I'll never know. One would like to think that as soon as radiation is over that one would turn around quickly but that's not reality. It takes a while to recover.

You are right on the brink of getting started - hang in there. The PEG people, like Dan, have some good ideas to try. I couldn't keep down anti-nausea meds so I ended up using Compazine suppositories and they worked pretty well.

You have to keep trying to keep your nourishment up, it is vital for healing. Make sure you don't get dehydrated.

Patience - what you are experiencing is pretty much the normal.

Len,
I had surgery about six months ago to remove and rebuild the right side of my tongue with a muscle from my chest. I am about 12 weeks out of radiation and I am using a peg tube. I have switched to prosure for feeding. It helps the body retain muscle. Prosure seems to not give me as much naseau, I still do get the runs some days.

I am eating soft food such as pasta and noodles that slide down easily. Swallowing is still work, very hard work. I saw this news report on TV that had a oral cancer doctor that said that your body could forget how to swallow. It scared me to death so I have tried to at least drink every day through all this so that I could swallow. I find milk and cheese sauces don't born my mouth as much. I also add riccota cheese to tomato sauces to cut down on the acidity.

I also drink lost of water with my meal to help get food down. Take very small bites, it makes it easier. My salavia is really reduced so drinking water really helps. Even taking little sips to help in chewing.

Recover has been much slower that I anticipated but I do feel that I am improving. Maybe at a snails pace but improving.

have you had any speech therapy?

Lynne

Hi Len.
I had a peg for the surgery and all through rad and chemo. You do not have to confine yourself to that yucky canned stuff, you know. I could hardly stand that stuff and the smell of it could set me off. I mixed a lot of food up in the Vitamix, which is basically a blender on steroids. As long as stuff is thin with no lumps, it will go through the peg. For example, I thinned applesauce with apple juice and turned it into juice and that was a nice change. This is the same procedure you can follow when you get a little better at swallowing. You are probably regaining some sense of taste by now, so that will be a real treat. Finally, hang in there. We got though it and you will too. Every single one of us did it at our own pace, so you cannot compare yourself to anyone else -- there are just too many variables. Just know that you WILL be better!