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.

Hi Mick/Jamos, I also had the weird smell thing. My partner smelt strongly of vegetables, which I found very disconcerting! But be assured, it doesn't last. I can't remember when it stopped, but it did and my taste for food is pretty much back to normal too. Sally

I cant see why you would change the removal route if its a "normal" PEG.
Surely it is simple and over and done with just pulling it out. No waiting to make sure ( and checking ) to ensure it is passed.
I change Kris's Mickey when needed and it is so simple. Out and In.Can not see why Cut and push would be preferable.
Tammy

Well just a note. Yesterday I was sipping my water and I decided to try to drink the whole bottle. I did it. I was so happy, I decided I would try to drink my jevity. I did it. I have not used my peg for the last 3 feedings (still did the maintenance water this morning).
I hope that I can continue to drink and not used the peg. I will wait a few days to see if I can swallow a pill or even try to eat something

Eat with a large water chaser at first. Keep that water handy. Thrilled to hear you have been able to drink - you are well on the way!! Well done.

Donna

That is really great to hear! You are on your way. If you can do the water you may be able to handle things like scrambled eggs as long as they are not too dry. Just have the water ready as was said before.
Great job just going for it!!
Kathy

I am 2 weeks into avoiding using my PEG, and want to eat everything, but still take meds trough PEG. Soggy every thing is the key and go slow. I have choked and been coughing beans and milk down my nose, but it is so good to be back eating. the choking is scarey as it difficult to clear. A lot off trial and error, mashed potato better than rice, pasta not great. Fresh tomato less acid than yogurt? go figure. Creme caramel great.

Mickey, it may seem a long haul, and hard to notice the moves forward but they will be happening. I have felt pretty stuck with my swallowing for a while, but I am now only needing one Fortisip bottle a day to meet my calorie intake and yesterday I had none, so something must be improving. Also my RIG scar is no longer looking like a second belly button! Look forward to the future. Sally

Today is Sunday and I feel not good. I went to Thanksgiving and there were a few running nose kids (grandbaby and grandcousins).
Also yesterday I cleaned out my closet, as it had a layer of dust on the clothes and everywhere from some home maintenance. As I was cleaning it out I was sneezing (allergies) so I put on a dust mask, perhaps a little late.
So last night I started a drippy nose (clear), congestion, and a little cough which was dry and none productive. (I took a decongestant and a Antihistamine) (it dried out my nose and throat)
My temp this morning was 100.6 so I took Advil, still had some chills and cough and congestion. About 5 hours later I took my temp and it was 101.3, so I called the nurse on call. (I am 6 weeks past chemo and 5 weeks past radiation)
I ALSO told her I am getting a bad smell from my PEG ever now and then. She said to keep taking Advil or Tylenol and call a and talk to the Doctor Monday.
Then she called back about 20mins later and said if my temp gets above 100.5 to go to ER because she thinks I May have PEG infection. She said they will take out the PEG and check for infection and give anti-biotic.
Well about 1.5 hours later it was 99.7 and I don't feel the chills either.

Question, Since I started Drinking my Jevity (and eating a LITTLE) I haven't used my PEG for food in 10 days or so. When I drink my 2 cans (8oz each) I have been slamming it down less that 5 mins for both. Could I be drinking too much at once and it is coming out of my stomach?
My stomach has always been big and it still is.
?
I will go to the ER if my temp goes up, but I don't want to spend the night... ofcourse... And the OC office clinic was closed Thrs and Fri for holidays so it will be triple packed Monday and don't really want to go there....

I think you just have a viral infection and will have to ride it out.As you are 6 weeks post chemo your immune system and blood cells should have recovered.
I dont think you will be drinking too quickly and it coming out into your stomach. Most PEGS in my experience have a small amount of serous type ooze around them that can have an odour. You would have a degree of abdominal pain and increasing abdominal distension if your Jevity was leaking into your abdomen and you would have a very high temperature. Also if you are having normal bowel motions this would also rule abdominal spill out.
Get plenty of rest. Drink plenty of fluids and continue to take Paracetamol for an elevated temperature.
Of course, should you have a persistantly and markedly elevated temp. with chills and shakes ( rigors ) and increasing abdominal pain then get to the ER.
You could also flush your PEG with a small amount of water, about 30 mls to flush the line.
Take care,
Tammy

Hello Mickey:
When I had an infection in my PEG (opening), I didn't have a much of a temperature at all, just 99.5 and just felt nauseated and crappy. The area around my PEG seemed sore, but I didn't associate it with the way I felt UNTIL I got up in the morning, was walking down the hall, and the PEG literally fell out. All of this brown goop came pouring out. It wasn't a pleasant site or odor. I couldn't reach my gastro doctor, so held a towell over the hole/mess and went to an appointment I had with my chemo doctor. He immediately took a culture. Meanwhile gastro doctor called and said go to hospital to have it re-inserted. I went to hospital, but it was so sore around that area I could not stand the throught of having another put in, so refused. Gastro doctor wasn't happy at all, but since I had been drinking my Jevity for weeks, and managing to swallow my pills (crushed), I decided to try without another PEG. My chemo doctor called and said I had pseudomonas bacteria and prescribed antibiotics (forever, it seemed). So I'm glad I didn't let them put PEG back in. I slowly added small bites to eat with the Jevity, and never had another PEG put in. I think it was a little longer than your timeframe with a PEG, but maybe you'll be able to do likewise. I just picked up on he smelly part of your PEG, and it's something you should have checked out as pseudomonas does have that symptom. Not to scare you, and you won't die from it, but if you have it, you need antibiotics. I wish you well.
Julieann

Thank You Tammy. That makes me feel better. I am starting to cough up some white stuff, so it probably is not the PEG.
The nurse did say to quit putting neosporin on the tube (I had been doing this daily) she said to just wash with a good soap and dry.

Thanks Again!
Mickey

Besides soap and water, I clean it with peroxide daily, and apply bactrim. After a fungal infection around the tube site, dr prescribed clotromizole ointment. The thing about applying antibiotic ointment, anti fungal often is developing a resistance to it. I just completed treatment last week, and do smell garlic on people's breath. Seemed like the whole hospital was eating it.

while everybody knows how hard I am on "alternative" treatments, I found that Tea Tree oil helped keep the Peg stoma clean while reducing the granulation tissue. Some sites claim that peroxide use increases granulation tissue so I quit using that. I do use antibiotic cream on the Peg site sometimes. Although despite tea tree oil, in the end, I have to use silver nitrate sticks to burn off the granulation tissue. In over three years, I have never had an infection of the stoma or PEG.
BTW, I love the smell of garlic
Charm

EEEW..charm garlic??? ack!

On another note most infections at the skin level are characterized by redness and soreness, as well as oozing. Does sound like you can have a cold. I had one and am finally getting over it after sucking down some extra vitamin c, and b12 for a few days. ;o) it was a nasty head cold that tried to move into my chest, but I think I nixed it as I only had one day of coughing possibly related to phlegm etc.. So now I just have draining sinuses, and a bit of the sniffles. (hate colds!)

secondly can you drink jevity? ACK! I know was told I wouldn't be allowed to drink the formula I was on as the peg they inserted into me went directly into my jejunum. I was told it was for peg use only as it was predigested (so GROSS) and when I drank it was usually a boost or ensure. Does it actually taste okay? just curious. take care and feel better.

cheryl

I think you are mixing up Mickey's posts and mine. I do not have a cold and have not had one ever since the first round of TX. I used to laugh and say there is in fact a cure for the common cold, Radiation and chemo. Likewise, I have never had any infection ever in or around my PEG.

I have never drank a can of Jevity and now with a permanent inability to swallow, I never will. I don't think I'm missing anything in that regard. Like yourself, I did not even know anybody drank Jevity until I read this thread of Mickey's.
The very first time around, when I refused to get a PEG, I drank Vanilla Ensure exclusively.

Charm

Well I went to the OC and they prescribed anti-biotics. I do think it has went into my chest, and I can't really clean my sinuses and spit out a lugi (sorry) as I cant stop it from going down my throat. The same reason I can't gargle I guess (the ENT said that the RX burned some skin or latterial tonsil thing, but I should be able to eventually gargle). Although I do eventually cough it up.

The Jevity does not taste too bad, it is not sweet like ensure or boost.

The OC said they will take out my peg Friday. He seemed to think it wasn't infected.

I was on a PEG for almost 2 years...it was a liberating moment coming off of it. Really helped intimacy too Yeehaw!

:o) Charm I did a kill two birds with one stone post.. the garlic comment was for you... the cold comment was for mikey

on the other had I think I have a sinus thingi ( cold etc.. ) going on so it could be the meds.

hugs all.

Well the PEG is Out!!!!! They pulled it out (they told me that cutting it and pushing it into the stomach is old school).
Kinda sore. Was not infected, they said.

Still some congestion in chest but feel better....

Oh, the Jevity 1.5 cans say that you can drink it or PEG it. It kinda smells and tastes like baby formula I guess, sort of thick and not too hard to swallow. Not a strong taste....

Thanks everyone. later

Glad it's gone and icky on the jevity.l
Congrats on getting through it. Mine was simply yanked out I could have done it.

I would like more information on why a tube is inserted {PEG}
When I had my neck surgery to remove tumor SCC from my parotid gland and the 6 weeks of radiation, I did not have any tube. I only ate soft items with lots of water { soups, maltomeal, shakes and nothing solid that I had to chew up. I used a mixture of "magic mouth wash" that I took a little before meal time and it numbed the esophagus into taking the food down. After one week post radiation, I ate my first hamburger in months. Little hard but I loved it.

A feeding tube is up to the patient and their doctor to decide about. Not all doctors or facilities will have their patients get a feeding tube while others insist upon it. From my understanding if a patient is getting chemo with rads most facilities will encourage the patient to get the tube. For many members, a feeding tube is a very necessary tool to get them thru treatments.

For more info try doing a search both here and on the main OCF pages. Im sure you will come up with lots of interesting reading material.

Thank you for the information. Just wondered about it as I was never offered one. LOt of trouble with sore esophagus for the 6 weeks.

Hi group!
I've been living on a PEG for a while now. I'm trying a blog in hopes of giving others hope. I'm on my second PEG - replacing the first one (wore out the end) took about 10 seconds!
As I can tell from all of your stories, there are a lot more people using a PEG that I would have ever imagined!
Regards,
Jack

Hi Jack. Welcome to our group - those who rely long term on the PEG .
Tammy