Hi I am so happy to see this forum that has so much to offer.
Let me introduce myself. we found out about my husbands cancer just a month back after having repeat biopsies. He is told to have 35sessions of radiations x 7weeks with 3 chemos every week. Cancer is on roof of the mouth, left side of the tongue, right side of the gums upper/ lower, lymp node. I am sick worried to my stomach. Are there any special things I need to keep in mind or do. What are the survival chances? Is it really hard on apetite. Please advice. Thanks to all.

Hi Roma, Glad that you found this site. There is alot of information on this site, I think you will find it very helpful. I cannot answer your questions, I had surgery to remove my cancer. But many here have had radiation and chemo and I am sure will answer your questions very soon.

Thanks Wendy. I am researching the forum to get as much information as I can. It is nice to be able to relate to others that have been there and done that.

Roma, welcome. Sorry to hear about your husband but glad you found this site.

As a word of general advice: encourage your husband to eat and eat and eat right now. He's going to lose weight during treatment and there will be times when he simply won't want to eat anything. I'm sure his doctors have said the same thing but it bears repeating.

As others will no doubt tell you too, focusing on the "survival chances" is something better avoided. Sure, we all have those thoughts, it's only natural. But wondering about statistics is ultimately, to my mind at least, a losing proposition. We're all different and we all react to treatment differently. It's easy to say "think positively"... but it really, really does help.

Ask any specific questions here at any time. There's bound to be someone who knows the answer!

Courage to you both.
David 2

Thank you David for replying back. Greatly appreciate words of optimism. It keeps the spirits high.Yes you are right Positive Thinking keeps one going.
I will focus on getting him to eat a lot. He in general does not eat that much. But I try to get him to eat.
I saw in your signature HPV pos. Is HPV for good or bad. My husband has been told HPV is the main cause.

Roma,

I doubt seriously that his slides would test positive for HPV as it usually infects the Oropharynx region which includes the Base of Tongue (BOT) and tonsils.

I am a tad surprised that they are not going with some surgery first only because so many others with a similar diagnosis had it first.

I also think you may be mistaken on the 3 chemos a week. Most either get 3 chemos during the entire Tx or one chemo a week.

Welcome Roma!! You have found the right place. This forum is full of tons of info and the most supportive friends around. Sorry your here but glad you found us.

I had 3 surgeries before any other treatment. My teeth had to go, for rads and chemo. The I had the rads and chemo for 4 weeks but only 4 Erbitux chemo and radiation everyday. As soon as that was finished, I had to have rad seed implnats put into my tongue going into it theu my chin and then Quaranteed for supposedly 3 days which turned into 7 days. Your hubby needs you there for him at all treatments, I had noone but a stubbornness to win the war. Like david said, Eat , eat and then eat more. I lost 80 lbs up to this point. Now I have to have my bottom jaw removed and a new one made if they can. It's a tough road to walk, but takin it one step at a time this road can be walked. Good luck . This sometimes changes ones personality too, so don't be surprised at some things he might do or say differently.

Welcome to OCF Roma. Im sorry you have to go thru this with your husband. I also had my first round of OC in 2 seperate places in my mouth. Most people here have it in one place. It can be cured. Please dont make yourself crazy over statistics. Every single person here is different and will respond differently to treatments and medications.

Wishing you all the best with your husbands treatments.

David : May be I am a bit mistaken regarding the chemo. I have to see the doctor in a day perhaps i will get to know better i will write down questions to ask dr.

Susan : thank you for your support and welcome message.

EzJim : Thank you for your comments. It feels nice to hear positive thoughts.It keeps spirits high.

Christine : Thankyou for support and advice.

I am so happy to to have gathered so much information from you guys. Thanks a ton .

Welcome Roma!

Glad you are able to find this site, it truly is a blessing. I suggest, writting down any questions you have so you are ready during dr visits. They bombard you with a ton of information at first that you are only able to retain so much of it. Being able to jot stuff down may help a bit.

Have your husband eat, eat and eat whatever he would like. Go to your favorite restaurants and have him eat his favorite foods.

We are here to help you guys get through treatment!

Hi Roma and welcome. You've gotten a lot a helpful advice here already. You're own idea of writing down questions to ask is very good, also take notes during dr's appointments as your husband may find it hard to focus on all the details. We have all survived this and have had posters who are 20+ years from their battles and still living the good life. And you can imagine how much better weapons there are now opposed to 20 years ago. In your role as caregiver you will definately not have it any easier than he will. Many here will say it's even harder. Keep up your strength by being sure to take care YOU.

Hi every one. Need your Advice. First of all David you were right there are will be only 3 chemos.

Please advice if any one knows what would be the best option.Today the doctor adviced they will give full blast radiation. Options with radiation are either 3 chemos or 3 Panitumumab study drug. What our concern is that chemo is tested but this new drug is also very promising as it targets only the cancer cells not the healthy ones. This new drug has been in use for just over 2yrs.
Has any one used it? Thanks !

Panitumumab is never used by itself as a mono therapy. It is in the same family of drugs as already approved Erbitux, they are both monoclonal antibodies that interfere with a cells ability to reproduce. This is a good thing since cancer cells replicate much faster than normal cells, and slowing them down while OTHER treatments, like conventional chemo and radiation, can work more effectively. They both were used in colon cancer as their proving ground. This drug was introduced in 06 in colon, but the manufacturer is trying to expand sales into head and neck like BMS did with Erbitux. Hence the clinical trials.

i don't know about chemo, but i know radiation. I had 30 over 6 and a half weeks. He should eat as much as possible now. I lost 70 lbs, 25 lbs from surgery and 45 from radiation, and it wasn't good weight, it was all muscle.
He will more then likely end up on a peg feeding tube. It's very rare that anyone can make it through radiation of the mouth/neck area without using the peg tube. He will get sores on his tongue/cheek/throat. I would keep a close eye on him and make sure to talk to the doctor about peg tube and get all info for it before he needs it. I went 12 days without any nourishment before they put a picc line in me, and then 2 days later the peg cuz they couldn't get it in me before. Almost might be better to get the peg tube sooner rather then later but that's up to both of you.

Also i am wondering. How do they know for sure it's in the lymph nodes? For me they did a scan and saw that my lymph nodes were enlarged, but they didn't know for sure until they removed them and tested them. Did they biopsy a piece of his lymph nodes? or i guess maybe they are just assuming it's there due to the spread to the other locations.

I wish you both as smooth of a ride with this as possible, and hopefully he doesn't have all the side effects i had with mine.

He will need you there by his side for sure. I give full credit to me making it through radiation to my boyfriend who was there for me one hundred percent throughout my battle.

If you have any questions about anything going on with radiation, ask away and i will do my best to answer.

And i know this isn't very positive, but it's some things i wish someone would have told me before going through radiation. Really the only positive i can think of about radiation, is i am still alive today!

Here's a story out today (which later will be on the OCF news feed by lunch time) but since this thread is discussing this, I thought I useful to give you the information here first

http://www.internalmedicinenews.com...ced-head-and-neck-cancer/4eb8652e30.html

Thanks Brian! After researching and reading we decided to with Cisplatin Thanks to OCF.

@ bethers0808 - Doctors did lymph node biopsy and the scan. Doctors will be giving full blast radiation in the mouth,from the back of the neck, and lymph nodes. Lower dose on side of the tongue and other areas. Regarding peg tube doctors said they would use it. I am not sure when? from what i remember- they said after a week or so.
Thank you so much for your help.I have still so many questions to ask and tons of information to seek. But again reading stories on OCF gives me strength and courage.!

Roma, They seldom miss it, but make sure to tell the docs if any tinnitis (ringing in the ears) develops. Cisplatin an a small percentage of people, can cause permanent hearing deficit and even complete loss. The ringing in the ears is an early warning sign that you are one of them, and they can switch him the carboplatin which is the fall back position for people that cisplatin does this damage in.

I was told albeit after the fact that the ringing is a result of damage that has already occurred so you need to tell them ASAP to prevent further damage. Also this "ringing" as they call it really can manifest itself differently with each of us. I never heard a ringing, I would describe it more like a very faint electrical hum which was not constant. I was never tested pre Tx, only post and they told me that I have permanent loss in my high frequency range in both ears. Not bad enough to wear aids but I have trouble singling out a voice in a group of people; can't hear my cell ring that great; can't ever hear a cell phone ring on a TV show; trouble with female voices (now that can work out to a male's advantage!) and have trouble with emergency vehicles which has led to a few scary intersection moments!

ok.I did get sores in my mouth, and my neck the skin peeled and then was really red and gooey for a while. Also was nauseated and vomitted for the last 4 weeks of radiation. I didn't get my peg tube put in till 4 weeks in, and wish they would have put it in sooner.

I started developing sores in my mouth after the first week, but it isn't that way for everyone.

I also lost my voice the last 2 weeks and it came back 2 weeks after radiation ended. Lost hair in the radiated areas as well, but it's starting to grow back now.

If you want to know anything specific about radiation, ask away.

Hope everything goes as smoothly as possible!!

@ Brian @ David my husband had his ear tested before the Tx began. Past 2 days he is complaining about the hum in the ears, which is not constant.

He had his 1st chemo with 1 radiation and was asked to stay overnight. Doctors put IV then cisplatin and then anti nausea and wanted to monitor the kidneys. His treatment began on the 1st Nov. Tomorrow will be onset of 2nd week.
He has been having nausea from last 4 days though he takes anti nausea pill. Some how he is finding most of the food tastless or blank. Even the sweet stuff does not taste sweet.

Now i am concerned about the humming. also i noticed some swelling on his right lymp node area.

@Bethers0808 you had nausea in the last 4 weeks of radiation? he has experiencing nausea just 3days after chemo.?

Hi Roma,

Everyone r3eacts differently to the chemo. I had nausea from chemo on the very first day, although the antinausea helped. If your husband's antinausea is not helping then maybe you can discuss this with his MO and they can swap it for something else. I would definitely tell the MO about the humming and swelling right away.

MInh

The hearing experience that he is encountering is most likely damage from the Cis. Please inform his MO asap. Perhaps he may be switched to Carboplatin. Depends on the MO. Some I've talked to think Carbo is just as good as Cis and some don't. To my knowledge there is NO research out that that confirms Carbo is equal to Cis in it's effect on this cancer but many here have been switched and I my MO at Moffitt told me that he would switch me but I was not timely on recognizing my damage sound.

The problem with this cancer, whether HPV+ or not, is that it just doesn't always act the same with everyone and the penalty for "guessing" wrong can be the ultimate price so it's easy to throw out recommendations, even extremely educated ones, but we are not the ones that will have to deal with any consequences.

I had the ear problems and still do altho not as bad as before. I don't remember much humming but a lot of a high pitched squealing type of noise. Like everything, it all takes time. My worse with the ears was a constant hearing of my heart that sounded like a construction job from somewhere else until I started paying more attention and figured it out. These things are nerve wracking. Good luck to you both.

Thank you all once again. I have question for you David- how did you manage not to get the peg. Today we have an appoitment with the doctor. we will inquire about the carboplatin, ears, swelling around lymph nodes.
@EzJim my husband said it is not like humming but something like electircal shriek. Something like you are describing.
Thanks you so much once again for giving courage and strength.

My RO at Moffitt doesn't really like them. That was 4 years ago and he still hasn't changed his mind. He says he sees to many patients become life dependent. Add to that I was bucking this whole Tx from the beginning and when he said it was up to me I emphatically said NO. Look the whole Tx boils down to killing the cancer with as little collateral damage as possible. I definitely could have used the PEG during Tx and I got so skinny, so weak, so dehydrated, so everything that they did put a nasal tube in post Tx for about 2 weeks. It made a huge difference and I walked out of my tunnel and fortunately for me I was spared another potential collateral damage.

I wasn't a very smart patient and Brian didn't get me to this site until I had walked out of my tunnel so I didn't have the sage wisdom that this site brings but as it turned out I would do the same thing if I were faced with that decision again. I would also be a tad smarter since I have acquired a great deal of knowledge in my 4 plus years on this site. JMO

David - my son's cancer team also told us at the diagnosis that a peg would be likely but then after they all got together with us, (including my nurse friend and my daughter) they left it up to Paul and he emphatically didn't want one. As treatment went on and it got more and more difficult to eat, I worried because he wasn't taking in enough nourishment no matter what I fixed - until finally I told him if he didn't eat something, right then, I was going to call the doctor and make an appointment to get him a PEG!! That really got him eating again and I was glad that I had that in my arsenal of "encouragement" weapons! Now, I still wonder, though if the Peg may not have made life easier for him. The nasal tube post tx sounds like a life saver to me.

I really don't know why more people aren't offered the nasal tube as a short term solution. Certainly it can't be used by all of us but the ones that can use it should be given that option. I only had to have it in for 2 weeks but I easily could have tolerated it for a month or so. I was still able to shower and swallow and I really didn't go out in public so having it sticking out of my nose didn't bother me at all considering how much it helped my stubborn butt. I have zero post Tx swallowing issues and I know that is partly due to my lack of radiation damage to that area but one could avoid all of the problems I keep reading about associated with the PEG. Again it won't be suitable for everyone but for those like me it could really make a difference.

David my husband is not willing to get the peg. doctors are telling him it would get very difficult in later weeks to swallow. his theory is liquids are going to go through the peg and the same can be done by mouth, by that he means ensure diet. David does the nasal tube function similar to peg tube. Like you said you could shower etc. I am not sure here in princess margaret do they give an option of nasal tube.
Nasal tube is only post Tx.?

I managed without the PEG. It adds to the work and stress but gives you a big head start towards eating again. I did also need a couple of hydration infusions as I became very dehydrated. As Davis said, there is always the nasal tube to bail him out.
All the best,
Rob Jaffe

Thnak Rob. when did you get hydration infusions, were they given through IV.

Roma,
Yes, I needed IV infusions. There was about a 3+week period that I could not take anything in, that's when I was infused. A little secret that they taught me for my nausea was to cut the skin and a bit of flesh off of an orange, squeeze it and breath it in. It was amazing how well that combated nausea. During this period, my mucosis was soooo bad that I could not swallow at all, everything was spit out into a bag or cup. I carried a plastic cup with me at all times, lined with orange infused paper towels. You have a bit of a challange ahead of you. Patience and attitude will help very much. Best of luck and we are all here to hold your hands.
All the best,
Rob

My Radiation Oncologist is also opposed to PEGs based on his experience that patients can do very well without them. I was one such patient who got through radiation and chemo with no PEG. I also never got dehydrated, did not need any IV infusions, etc. I did end up living on Ensure Plus for a while and recovered not only my swallowing ability but also was able to eat all types of food not just soft stuff very quickly after TX was over.
Now that I am on a feeding tube for life, I will concede that it would have been much easier for me to get a PEG but if I had a do over, I would once again refuse a PEG.
I know how caregivers here worry so much about a patient not getting a PEG. IMO that concern is fueled by the misleading information given by many doctors. It's technically true that getting a PEG halfway thru radiation is almost impossible, but that's only because PEG stands for a tube put in with an endoscope (the E in PEG)and your throat is a mess with radiation. My experience is that it's no big deal medically at all to get a feeding tube put in with a fluoroscope instead of a endoscope down the throat. It's the same tube, going to the same place. When I had mine done after the surgery required it, I was down to only 119 pounds - much lower than my lowest weight during the first radiation, I was dehydrated and only two days out of the ICU.
Here I will diverge from David and say that if I had to get a feeding tube, having had both a nasal tube and a g tube, I would get a g tube.. Everybody is different and for some people it just doesn't matter. But it mattered to me a lot so I continue to post in support of fellow "just say No to PEG" patients

Roma,

I went through treatment without a Peg or nose feeding tube even without Ensure. Yes at times it was very difficult but I just pureed soups and oatmeal and ate them everyday. The zylocaine viscous was very helpful when my mouth got really sore. I did needed to be hospitalized for 5 days due to dehydration and they put me in IV drip but I would do it all over again. From reading other posts, many do have swallowing issues from the PEG which I don't have at all. If your husband is determined not to get the PEG, then this determination will also get him through his treatment. Good luck with the treatment and always post any concerns you have on here, I found this site to be so helpful during and after treatment, when you are so unsure about everything.

Minh

@ charm2017 Thanks for a detailed reply. To my understanding regarding the feeding tube, you are still on some kind of a feeding tube. what is g tube?.

@ Rob Thanks. So eating can get tough after 3weeks due to mucosis. Docs are insisting on him to get PEG. Docs are saying the kind of radiation they are giving him is full blast and a larger area is getting treated. But my husband is not willing to get it.

@ Minh my husband was on endocet now docs have prescribed him medicine that has morphine in it. Thanks Minh for replying.

OK so all of the above posts only reinforces the fact that we can alll be different in our reactions to the same treatment.

First off forget about Ensure, get him to try Carnation Instant Breakfast VHC as it has a whopping 560 calories in the same 8 oz can so that means regardless of how he gets it to his stomach he won't have to open as many cans nor waste as much time nor endure as much pain, etc to get the necessary calories.

A PEG is a type of G tube in that it requires an insertion thru the the skin into the stomach. The nasal tube requires NO surgery. It takes a few minutes at most to feed the tube thru the nose into the stomach. Then you must be x rayed to make sure the tube is in the stomach. Then the metal rod is pulled out.

Thank you so much David. I will get him Carnation. He is going to be very happy to learn about Carnation instant breakfast.
I also know about nasal tube now. Thanks a ton !

I think it is very important to consider the risks of deciding to turn down a PEG.

Although in an emergency, many major CCC's can put a PEG in without losing any treatments, a break in treatments due to adverse side-effects is undesirable and may lead to a poorer outcome.

In most case additional doses can not be added to offset the SCC re-population that can occur during a break in treatment.

Several recent clinical pilot studies using OPET (PET/CT) studies of SCC tumors (primary & Lymph secondary) have found that cancer cell re-population seems to begins after just two days of a break in treatment when the cumulative radiation dose is below 6gy and within five days of a break in treatment if the cumulative dose is below 46gy.

18-F-FLT PET/CT scans and 18F-FDG PET/CT scans were obtained at a total dose of 2, 6, 10, 20, 30, 40, 50, or 60 Gy (i.e., after radiotherapy) to provide a range of Total Dose points for assessment of cell proliferation.

Scans also compare 18F-FLT with 18F-FDG with regard to their ability to differentiate residual tumor from inflammation.

The newer OPET (CT/PET) scanners using F-FLT instead of F-FDG tracer can differentiate between cancer re-population and inflammation.

Apparently studies are also being planned to determine probable difference in HPV- verses HPV+ breaks in treatment since HPV+ SCC is thought to be more sensitive to RT.

Roma, I am one who favors the PEG tube. Ive gone thru OC 3 times and have used a feeding tube each time. Minh is a rarity, most people who do not get the PEG struggle with nutrition and hydration. It seems like she is one who had an easier time of it than most.

Its so much better to have one and not need it than to need one and its not there. Then you have to wait a couple of days for all the paperwork before you can get one. Ive seen many people go thru this without it and end up getting an emergency one anyway. I also had a port for the chemo, which was very helpful.

The Carnation Instant Breakfast is different than the Carnation Very High Calorie formula. The Carnation VHC is 560 calories per can. When things get rough and swallowing is difficult, getting the most calories per swallow is very important. Its not easy to find. I order this thru the Amazon link right on the forum pages so that OCF gets a tiny kickback.

@ Don I am really confused now. I will have a good discussion with my husband regarding the tube. As you said there could be risks involved by not having it, I guess we will make our decision today as the docs want it in by Monday.
@Christine I am realize that swallowing does gets difficult after a while and every calorie counts after reading so much in the forum.
I will post once we decide over PEG.
Thanks to both of you.

How much of work is involved in PEG. Is it quite painful though. please advice.

Roma,
I was going to stay out of this discusssion but I am also one who went through radiation, no chemo, without a PEG tube and did not need any hydration. I only lost 4-5 llbs but I weighed 122 and am 5'5". Other than having my 16 rear teeth removed, I had no surgery or sores in my mouth. By week number three I was living on Ensure Plus. My RO didn't think I needed a PEG tube.

I have also had the nasal tube after my surgery in 2001 and if I would need a tube during radiation, that is the one I would choose. Very few people are able to do radiation AND chemo without a PEG tube but if he is determined to go it without, the nasal tube is a backup if needed only for a few weeks.

Take care,
Eileen

Since you seemed confused as to what is the right decision regarding the "PEG" I will put my two cents in. I try to stay out of these "discussions" because people try to defend their position and it sometimes gets heated.

When my husband's RO first mentioned the PEG, my husband said "no way, I am determined to make it through being in control and won't need one". My husband's RO said he has only had a couple of people make it through treatment without the PEG and they all were eventually hospitalized due to malnutrition or dehydration. He said once we get treatments started we do not want to stop mid-stream to have to put a PEG in. My husband agreed to the PEG but said he would just flush it and not use it. That lasted about three weeks and then he could not eat or swallow enough to keep up with what his body needed. Even with the PEG in he lost 30 lbs.

He only had the PEG in for a total of 4 months and did continue to make himself swallow water and other liquids throughout the day. He never had any problems after treatments with eating again by mouth. All three of his doctors - ENT, RO and MO all insisted that he get the PEG. They said that the treatments were brutal and that your body needs all it's strength to fight.

There are no heros only survivors. Making it through treatments without a PEG doesn't make you stronger or more of a man. My husband NEVER took any prescription pain killers during or after treatments. I don't remember him getting a medal for that either. I just felt you should hear both sides of the story. Good luck with the decision.

Roma,

I think if you have a good "Treatment Team" that you should follow their advice and probably do it the way they recommend, but it is wise to learn all you can, ask questions and challenge anything that seems questionable.

After my PEG was installed, I was under the care of the Hospital's Nutrition Center, then after a week of RT I was switched to care of the CCC's Nutritionist until the PEG was removed. I had appointments with a nutritionist once or twice weekly.

My liquid PEG diet was provided (Nutren 1.0 @ 250cal/can).

I asked about the Carnation 560, but was told it was too thick for direct PEG feeding (needs thinned down) and orally they preferred the Carnation 325 or a 250 calorie product to help assure that we are getting enough liquid to prevent dehydration.

I never had much of a problem drinking, but many people do and that can lead to dehydration very very quickly, So if your husband goes without a PEG and uses the Carnation 560, you have to be sure he also drinks enough fluid.

The Carnation 560 might save some cost, but it really won't minimize swallowing because he will also need to drink enough to consume around 72oz of daily fluids (check with his nutritionist for his actual requirements).

Also keep in mind that a PEG can not overcome nausea, but it might help with taking the meds to control it. Nausea can defeat the PEG and lead to dehydration and weight loss. I was so nauseated during my last week of RT that I couldn't even hold water down and within less than a week I ended up dehydrated and needed two re-hydration IV's.

Roma,

Another thought from me... the PEG is a tool, much like a computer or a power drill. Yes, I had one and yes, I needed one. And no, I didn't become addicted to it or keep it for years or months after my treatment had ended. As a matter of fact, I did everything I could to get rid of the damn thing. But it served me very, very well and if I ever have to do it again, I'll get another one. Yes, there was discomfort getting it placed (and even more discomfort when it pulled out slightly and got lodged in my abdominal wall) and yes it hurt when I finally had it removed but it made getting through treatment that much easier.

Yes, I can drive a screw by hand but why wouldn't I use an electric driver if one is available to me, ya know?

The peg is absolutely vital if you wish to maintain your body for this fight.Insertion part way along is not an option.It takes 5 minutes for the doctor to insert and 5 seconds to remove.Mine allowed me to supplement feed and although I lost 20 odd pounds I was is good shape for the fight.Don't forget to keep a positive mental attitude also

My thoughts are that you all seem to have made the Peg decision. I had no choice and due to a previous surgery, I wasn't a candidate for this. I say do what is needed to maintain your body and mind as close to normal as possible. It's funny what a good mind can do for the rest of your body.

Sometimes there's another side to getting a PEG "just in case" as set forth in this post by a new OCF member who went that way
Peg problems

Thank you all for providing valuable information.
@ EzJim Yes we have made our decision to go with PEG. Tomorrow they it will be done.
Thanks Charm I will read up your post regarding PEG.

My husband after brushing his teeth, cleaned his tongue and it scraped/ peeled, last night there was blood. i will ask the doc tomorrow about it. I have told him not do that anymore and brush softly.

Please advice. Is it normal to experience it.

Roma, you made a good decision to go with the peg tube. Its so much better to have it and not need it than to need it and its not there. There is tons of info on here about the PEG tube. Dont worry, we will help you learn how to use it.

Glad you will tell the doc about your husbands mouth bleeding. Some people are more sensitive to the effects of radiation and have a very sore mouth. Make sure he is rinsing several times per day with water, baking soda and salt mixture. This will help soothe his mouth.

Not everyone can go without a peg, no matter how much I tried, i just couldn't do it. My sores in my mouth and throat got so bad, and on top of that the nausea. I needed a peg and PICC line. I only had to use my peg for a month or two, but it really didn't do much good for me anyways, cuz the hospital staff gave me cdiff when they put it in, and that caused other problems which made tolerating feedings unbearable!

He says now that he won't allow a peg, but he may feel differently later into treatment. I was deadset on not having the peg, but 3 weeks in started my 12 days of not being able to eat or drink anything, and then they finally put in a PICC and then 3 days later the peg.

Usually they won't do NG tube during radiation because of the sores in the throat and the irritation it can cause, and also possible infection because it rubs up against sores and can cause openings and more room for bacteria to get in!

Nausea is different for everyone, but if his current anti nausea med isn't working, he should talk to the doc and they can switch and try different meds, they had tried 5 different meds on me before they found the one that worked best, and even then, i still vomitted, so sometimes, it's just something you have to deal with!

I hope he can make it through this without the peg, but if it comes down to the point where he isn't getting his meds, liquid or any nourishment, and you tell him he either does eat or drink or gets the peg, maybe that will help, but if he just can't, don't let him be stubborn, there may be other options for him depending on where he's at in treatments.

Also NG tube is really only meant to be in no longer then 3 weeks, Any longer then that and it can cause damage and sores in the throat.

I wish you both well and will be thinking of you as he goes through treatments, but you may have to be his rock, and harshly suggest certain things if you see he's being too stubborn and could really hurt himself!

ok, i just read the rest of the comments, lol sorry. Glad he got the peg. And yes, he should not be brushing his tongue during radiation. The top layer is essentially being burned off, and the peeling is understandable cuz he brushed it!! I was told not to go anywhere near my tongue when brushing.. and i still don't brush it and am 4 months out of radiation.
So no more brushing the tongue... i don't know what they will do now that it is bleeding, may stop treatment for a while to try to let it heal, but no matter what they do, i hope no more problems like that come up!!
Also maybe getting a extra soft/sensitive or baby toothbrush. That is what my rad onc told me to get as the bristles are much softer and even that still hurt towards the end, but i noticed a big difference when i switched to it.

Keep up the good fight!!