I am done over 3 weeks past treatment and feel weak, still use peg tube, mouth has been stringy saliva, but now getting dry.... goes from one the other.

I have noticed that people's breath all smell the same to me, just some are stronger than others, and it smells sort of like a cross between gasoline and garlic... Weird. And of course, lots of things do not smell the same. Some foods smell bad, some smell ok, very few smell like they are supposed to...
I know people have written a lot about taste changes and slowly returning, perhaps not all they way, but is the smelling sense connected to the taste or will it be separate? Will it return to somewhat normal? Before/After taste does?

I have learned a few things on this Peg feedings. I did try a small bite of chilli and a small drink of coke, but they both burned in my throat, I think tomato base burned and the sugar in the coke burned.. I am still on the peg tube doing all my Jevity and H2O via the tube. I am swallowing little bits of water though. (note- Last night my throat was hurting a little bit and when I went to bed, my throat started tickle Cough and I couldn't stay laying down, I got up after a few mins. and coughed up some wicked looking thing I thought was a round piece of plastic, but I guess it was some dead membrane from my tongue or throat. After that my throat did not hurt and I was not coughing). This morning, I noted I can drink water pretty good, so I am going to try some cream of wheat for lunch... Back to the PEG... One of my complaints about doing the jevity 1.5 feedings, is that it takes about 1 hour to do two cans. My boss at work said her Mother-in-law went thru this a few years ago (at 70 or so) and my boss said that I should cut the jevity with water.... I did not try that because I figured that if I added 8 oz of water to 8 oz of jevity it may be quicker, but it would be twice to go through the tube. Well I did try this, I put 2oz of warm water with 4oz of jevity, and Low and Behold, I did 2 cans in less than 20 mins. This is GREAT! Also I have noticed that the clamp on the tube, when I open it, still presses slightly on the tube, so I have taken a top of a pack of pentel machanical pencil lead pack and placed that between the ends of the open clamp and it allows fluid to go unrestricted. I also ware an under sized tee shirt to hold the peg tube against my stomach instead of tape, while I am moseying around the homestead.

I go for my 4 week OC checkup Monday, 11/13/12. I can tell I have lost a little weight, but not much I think. Last checkup was 194... (I started about 214) and should weigh 175, yes got/had the big belly...
Go to my ENT the week after that for 3rd month eval, and back to the RO the week after that..

My lovely bride has been rubbing the Aquaphor on my neck and cheeks and it has been helping a lot, think I may not look like a wrinklely old man after all... ( I will be 56 next month).

I want my peg tube out and to go back to work. Still like to take a cat nap now and then, hope this is not just a bad habit I picked up...

Praise the Lord!

How great to hear such a wonderful update! Congrats on finishing your treatments. Since you are now 3 weeks post rads you should begin to slowly feel a little better day by day. You will occasionally have some lousy days but soon the good days will out weight the bad ones.

I eat cream of wheat almost every day. I add some butter and sugar to it and make mine with 2% milk. To make it more high calorie you could add some half and half to it. The better you are able to eat, the faster the peg tube will be gone. My docs said if I could go 2 months without using it then I could get rid of mine. You dont want to get rid of it before you are ready and could need another one put in. Good luck with relearning to eat. Another very easy food is canned peaches, they will slide right down with little effort.

Best wishes with your continued recovery!!!

I did try to dink some Boost, but it burned, think it may be the sugar. Wondering if I have thrush. Will see the MO today and am calling the RO to see if they will give me Diflucan or see me first.

May not have thrush, it is hard to tell the dead skin vs the white thrush like stuff.....

Thanks again.

I drank my VHC room temp and had no problem if that helps.

Mickey
I am about 2 1/2 weeks out of treatment and dealing with the same problems as you. I am really becoming concerned with forgetting how to swallow. Up until last week I had done well with eating at least a little everyday. Last Tue I caught a case of the muccousis and coughing fits and have just give up it seems. I've not had solid food since last Sun. I've tried to eat several times. It seems as though I've created these pockets in my throat. Food will go down so far and pack itself into the pockets. I can chase it with water ect... but eventually I will just cough it up.

Yes I've noticed the smell thing also. Strange things. I can't say I've gained any taste at all.

Hope you keep doing well.

HI there... sugar is acidic it can burn... the coke probably had fizz that burns too.

Try making your own smoothies maybe a little fresh fruit a milk of some sort and a sugar free protein powder (one with stevia instead of sugar or fake sugars) hugs... congrats on finishing treatment.

Funny how different we can be. I was never much of a sweets eater pre Tx but somehow that was the only taste that I had during Tx. Post Tx I had to have a desert with every meal since that was the only eating pleasure I had for many months. To this day I still navigate to the sweets for the most pleasure.

Thanks everyone.

Got back from the OC, he says I am doing well and wants to do the PET scan in 3 weeks. I am going to ask my ENT what he thinks about doing it then and ask my RO what he thinks. The OC said it is a little early to do the PET but he wants to see it.

On another note, he said that as soon as I get all my feedings via my mouth, then they will take the PEG out. I asked that if that meant that if I could eat a hamburger or were to do just the the Jevity by mouth (like I did before), does that count, and he said yes, if I can do the cans of Jevity by mouth that would be fine, because he said he wants the peg out too.

I am still not swallowing enough to drink that much, but that gives me an incentive to try to start drinking it a little now and then more and more. Jevity is not sweet and I don't think it will be too much of a burn, but, when I was drinking it, I liked to slam it down, so I didn't taste it too much. I guess I am saying that would be my goal, to try to kill a can (or 1/2 can) at a time, I can't see me sipping a whole can, then another, yuck!

Also, Question: They said to remove the PEG, they don't pull them out anymore, they cut it and push it down and it is eliminated via the bowels eventually... I was thinking obstruction, and I thought I might wanted it pulled out, but he seemed to think the new way is better. Any thoughts?

Depending on what type you have, Kevin had the pigtail, pulling it out was very simple. No pain, just a little messy and gross.
Haven't heard of doing it the other way.
Kathy

I have not heard of any other way to remove the PEG tube except yanking it out. Please keep us posted on this and how you make out with this new method.