thrush

diane l w

middle of second week of radiation and 3rd chemo-erbitux- got thrush already
am afraid about whats going to happen as everyone says after the 2nd week
of radiation all the sh-t starts.. need all the help to get me thru this
time, did anyone not have a feeding tube, and how did your feeding tube
get placed if you had one.. full of alot of questions..
thanks
diane from wisconsin

Kent Cass

thrush and tube
Diane- you came to the right place. Most of us have, or still have, the tubes. Nystatin might be in order for the Thrush. A tube is, at worst, nothing more than a nuisance; and, at best, a lifeline Godsend. I was only able to ingest w/tube for the better part of two months, with 4.0 formula x 4/day. It takes a little getting used-to, but is okay.

Had my tube put in before any treatment- Onco said I had no option, and she was right. I balked, but then did research- not a problem. They did separate Ops. for me- getting the tube and Port put in back in Jan/09. Still have both, and not a problem.

What C do you have? Will help us to know. Mine is/was Nasopharyngeal/NPC.

You are now with friends, Diane, who are willing to share your experience, and to be there for you. I do not say this- we all say this. And we are all proof that you can make it thru the battle you are in.

Believe.

kcass

diane l w

Kent Cass said:

thrush and tube
Diane- you came to the right place. Most of us have, or still have, the tubes. Nystatin might be in order for the Thrush. A tube is, at worst, nothing more than a nuisance; and, at best, a lifeline Godsend. I was only able to ingest w/tube for the better part of two months, with 4.0 formula x 4/day. It takes a little getting used-to, but is okay.

Had my tube put in before any treatment- Onco said I had no option, and she was right. I balked, but then did research- not a problem. They did separate Ops. for me- getting the tube and Port put in back in Jan/09. Still have both, and not a problem.

What C do you have? Will help us to know. Mine is/was Nasopharyngeal/NPC.

You are now with friends, Diane, who are willing to share your experience, and to be there for you. I do not say this- we all say this. And we are all proof that you can make it thru the battle you are in.

Believe.

kcass

tonsil cancer
had my tonsil and 2 lymphs nodes removed oct 26th, stage 4 because of lymph nodes
thanks for all your help

Kent Cass

diane l w said:

tonsil cancer
had my tonsil and 2 lymphs nodes removed oct 26th, stage 4 because of lymph nodes
thanks for all your help

condition
Diane- stage 4 with head and neck is not what it would be with, say, lung, or others. Mine didn't show until the neck lymphs, but there was not removal. Others are the authority of tonsil. I've been lead to believe that after removal- comes clean-up of the remainder, which is the chemo and rad.
You've been thru removal. The installation(s) will be easier. Outpatient. Had to get someone to walk with me out of the hospital for my initial 3 Ops. (biopsy, Port, tube), to rid the hospital of liability,but drove myself home for each. Believe it will not be a physical problem, and it won't be.

Forgot to include- the feeding tube presented no major hassles, like I feared it might. And, if you are struggling with this- tell your Primary Dr. Cancer does open the door for emotional help with prescrips, and it does help one to cope with it all. I do know this to be fact, Diane. We've all had to deal with the same anxiety. Some may be stronger than others. I fall into the "others" catagory, and I'm 13th-month.

kcass

ratface

Kent Cass said:

condition
Diane- stage 4 with head and neck is not what it would be with, say, lung, or others. Mine didn't show until the neck lymphs, but there was not removal. Others are the authority of tonsil. I've been lead to believe that after removal- comes clean-up of the remainder, which is the chemo and rad.
You've been thru removal. The installation(s) will be easier. Outpatient. Had to get someone to walk with me out of the hospital for my initial 3 Ops. (biopsy, Port, tube), to rid the hospital of liability,but drove myself home for each. Believe it will not be a physical problem, and it won't be.

Forgot to include- the feeding tube presented no major hassles, like I feared it might. And, if you are struggling with this- tell your Primary Dr. Cancer does open the door for emotional help with prescrips, and it does help one to cope with it all. I do know this to be fact, Diane. We've all had to deal with the same anxiety. Some may be stronger than others. I fall into the "others" catagory, and I'm 13th-month.

kcass

Feeding Tube
My Feeding Tube was placed with overnight surgery. Have the port done the same day, insist on it. No need to have two separate surgery days, this is hard enough. I'm not going to lie to you, the tube hurts when they first put it in, ask for pain meds. Pain is gone in a day or so. I was diagnosed in July and still have the tube in. I had a neck disection last week and we are just making sure i can maintain weight. i am able to eat fairly well.

The tube is a chore. You clean and flush it every day. Whatever you eat will be in the tube. It also smells like baby throw-up most of the time. Your going to leak gastric juices everyday out of the hole. It pretty much looks like snot. You flush it with tap water once a day. Then you use some swabs to clean around and under the bumper. Have them leave you a little slack from bumper to skin so you can get under there. It also helps relieve the constant rubbing which can hurt and turn your skin pink. use any antiseptic you like, neo=sporion, alcohol, iodine. Stick a split bandage around the tube, turn the the tube up into a 'U" and tape to your chest using cloth tape only. One pc of tape will do this, holding both the bandage and tube, appx 12 inches long. Tube is going to lie around your cleavage. Do the same for the bottom. Do not omit the split gauze as those gastric juices have a lot of acid in them and can really irritate the skin. I then wrap an ace bandage around my entire chest covering the tube and tape. The cloth tape removes easy after a shower. Use the wide rolls. Alternatively you could skip the tape and use the bandage. Bandage is a little uncomfortable for sleeping so I remove that at night. I use safety pins instead of those holder things. You get used to it. You'll need at least two ace bandages so one can go in the washer, try a six inch width and a four, see what you prefer.

SASH

Thrush and Tube
I didn't like the taste of the liquid drugs for the thrush and it wasn't as convenient to take so I had diflucan. 2 weeks worth of pills once a day and it cleared it up.

I went through treatment without the tube. I had the tube put in for when I had surgery. This was a big mistake as it was very painful to swallow throughout treatments. If you do have the tube, use it for your main nutrition but I would suggest that you also try and take some liquids via mouth so you don't have a problem in the future swallowing. Once the muscles aren't used for a period of time, it might be harder to get them to work properly again. At times the most I was able to swallow was 1 glass of Gatorade a day.

By the time my rads and chemo were done, I had lost 95 pounds. I then had to gain some weight and muscle back before they would do my surgery.

Scambuster

Had my PEG put in in week 3
HI Diane,

I hope you are doing OK. I had Tonsil cancer, left side. I had surgery to remove the tonsil and small part of the base of the tongue. I had 7 weeks of IMRT and Erbitux once a week as well as the 'Load' dose a week before they started the radiation.

I had to get the PEG in in week 3 inot my treatment as I found I was losing 3kg a week (6.6lb). I had no problem with the PEG being installed except I did contract pneumonia during surgery so if you do go in make sure they keep you warm in the Surgical theatre.

My tube was inserted about 3 inches above the navel. It was about a foot long and has a ratchet like valve which you use to shut off or open when you feed.

Unlike Ratface, I just tucked my tube into my underwear. As RF says, you keep the Keyhole dressing on (it's dry) and change daily and clean around the Stoma (Where the tube goes in). I used thin surgical tape supplied by the Hospital to tape 4 sides of the dressing.

I didn't have any leakage of gastric fluids as mentioned by RF but you do get a small amount of muck that will form around the stoma and to be crude but accurate, it looks a bit like dried snot. This is your body reacting to the foreign body and is basically dried white cells there to fight off the foreigner. As RF says you clean around the stoma well with Alcohol or iodine (Betadene).

I showered both with the dressing on and off. With it off, the muck I mentioned earlier will usually wash away. I occasionally went a day without the dressing with no problem but that may not be advisable, but didn't bother me.

I occasionally had some irritation or pain when I bumped the tube or the tube pulled if it tensed when I moved the wrong way due to me not leaving enough slack.That is where RF's tape up technique may be advantageous. I also have two little ones - so I sometime got a kick or bump from handling them. Otherwise no issue. Do as they will train you to do re: flushing. You will have a large syringe and I just used purified Water to flush after feed (Sometimes I was lazy and didn't....)

As for the procedure, They will put you under, send and endoscope down into your stomach with a bright light. When they are in the right position, the light will push against the internal stomach wall and be visible to the eye from the outside. That gives the Doctor his target and they will then push the instrument and tube through your stomach wall at that point. You won't know about it because you will be asleep. I was medicated for pain so don't recall too much pain after the procedure but you may feel a bit tender for a few days after.

I had mine removed just Monday this week so had it in for a total of 12 weeks. You will know when you are ready to remove it gauged by how well you are eating, and when you feel you don't need it. Remember we all react differently, but here you have a few peoples' experiences to compare.

Looking FWD how your are progressing. Remember you will get through all this and recover.

Regds
Scambuster