Hello everyone!! Hope you had a good day. My sister met with the radiation oncologist today. Unfortunatly I had to work so I wasn't able to go to the appointment with her. Apparently the dr made her very scared listing the "possible" side effects. He mentioned things like not being able to swallow, maybe losing her taste forever, having a tight neck, having dry mouth and sores. I have heard about the sores the thick mucus the dry mouth afterwards the fatigue. I am just not to sure about the other side effects and was wondering if anyone had any insight? She is extremly afraid of having the treatment now. She doesn't want to do it but knows she has no choice. They are going to radiate her tongue and both sides of her neck I believe. I was also wondering if anyone has any suggestions on what to fill the medicine cabinet with? Creams for the burns etc. She is going for her mask fitting next week. They also want her to go to the dentist before radiation to take care of any teeth issues she may have because her jaw bone is going to be weak. Is this permanent? Sorry for the questions I just wasn't there to ask the dr and my sister is not wanting to talk about it righ now because she is scared. Thanks again for your support. I don't know where I would be without this site.

Informed consent requires the doctor to tell the patient every possible thing, no matter how remote the chance of it actually occurring to her. IMRT radiation has reduced many of the side effects substantially, but there will be some. This is normal, not unique to her, and we all deal with it. Bottom line, as cold as it may sound, she just has to accept that this is no walk in the park, and that there are likely some consequences to this NEEDED treatment. Whatever her new normal is after it all, she really won't know for quite awhile after treatments end. But whatever it is, we all deal with it and go on to productive lives.

Going to the dentist to ensure that everything in her mouth is 100% healthy, is normal, as somethings like having a tooth extracted after treatments causes significant complications. So she wills start treatment with everything the best it can be. If a tooth is determined to be marginal or unrestorable, it will likely be extracted. In most people with healthy mouths (meaning that they brush and floss routinely) this is not a big issue.

The area that is going to be radiated is likey more complex than you have described as IMRT radiation allows for hundreds of small beams of varying intensity and duration to be used vs. the old technique that I had where your whole head from the cheeks to my clavicles got nuked. Things have improved significantly and they now can map around her major salivary glands if possible depending on tumor location, the nerves and muscles that control the swallowing mechanism, the facial nerves and so much more.

I am going to let someone who has more recently been through treatment talk to the issues of cremes and lotions for the inevitable skin burning, which can vary wildly depending on her disease state and location.

It really won't get to be uncomfortable for the first couple of weeks, and after that she will feel lethargic, need pain meds for the sores that will likely develop in her mouth, and other things, that as they occur, you can come to the board with comments on. Tell her to enjoy eating without remorse right now, anything that makes her feel good, her ability to enjoy eating is going to go away for awhile during treatments, but will likely mostly return a month or two afterwards.

Susan, all the side effects the doctor mentioned are correct. Your sister needs to remember that these are usually temporary inconviences. Going thru chemo and rad is no picnic and yes she will probably struggle like most of us did. It is necessary and must be done to get well. Unfortunately, the side effects worsen as treatment progresses. Just because the doc was thorough and told her all about the side effects does not mean this will happen to her. Some patients are fortunate and sail right thru while others suffer the side effects. Everyone is different. Be glad the doctor is honest and gives her full info.

Teeth are very important to take care of during treatment. I did my best but radiation loosened my teeth and I had to have them removed last year. She should see the dentist immediately and get floride trays made to use daily. She will want to take care of any cavaties and have any teeth removed which could be problems later. This is very important that its taken care of before treatment starts. Radiation can cause some big problems with having dental work done after treatment.

Your sister should be taking soemone to all her doctor appointments. She probably heard the side effects and tuned out the rest. Thats what most people do so thats why its so important to have another set of ears there. She can also ask to record the appointment with a small tape recorder. The person that goes with her should be taking notes too. If someone had gone with her, you would have full info and not bother yoru sister with asking her a million questions about what happened at the appointment.

Dont worry about stocking up on creams. Thats something the doc will give her prescriptions for. There are many kinds of creams to help ease the skin irritaitons. Over the counter stuff isnt strong enough. Any cream or lotion should be put on only after radiation. Never put it on before going to treatment. Using the creams will help to prevent scarring. My neck was burned and had open wounds on it but I kept putting the cream on anyway and I have no scars at all.

As Brian mentioned, she should be eating as much as she wants now. Dont worry about calories. Her taste most probably will change and eating may become very difficult. So she should eat everythingnow and have no regrets or cravings later.

Hope this helps. So much to do before all this starts.

The oncologist is just listing possible scenarios. That does not mean that all of this will happen. You also have to distinguish short and long term effects. Both of these are different depending on the person and also on the what exactly is irradiated. Especially the latter is quite variable.
In the short term the radiation is miserable (after 3-4 weeks) and gets more miserable after it is finished. Sores, pain, no taste, mucous from hell etc. However most of that will pass. Taste generally comes back but it can take a long time. She might end up having a dry mouth, this is less of an issue with imrt but depends greatly on what exactly was zapped. There are several saliva glands (3 major pairs) that are in different locations.
That said the radiation is the life saver unless they were able to remove all the cancer surgically. Look at it this way yes it will make you likely miserable on the short term and there MAY be long term effects. Dry mouth, dental issues, altered taste. But look at it this way even if you have long term effects, you have to be alive to experience them! Radiation will give you that chance.
She will need effective pain control, mouth rinses, viscous lidocaine etc
At this point you have plenty of time to get ready. Have her eat plenty of her favorite foods now. After 2 weeks of rads it will all taste like wet wallpaper.
Check out the ocf website there is plenty of info there.
M

Boy you guys are quick. ......agree with all of the above

Thanks guys so much for the info and experiences. I am very grateful that all her dr's are what they call brutally honest. She is the type that could deal without the details. I agree with you all 100% about dealing with the side effects to have life. She isn't at that point yet. Her additude has been mostly negitive. So she thinks the worse is going to happen. In my eyes she has healed exceptionally well from her surgery which to me was an extreme surgery. I belive she will heal well with radiation. The dr also said they will do everything they could to reduce the pain which is great and he doesn't feel like she will need a PEG. That I was concerned about to. I would rather her have a PEG just in case, but she is being scene at one of the best CCC's so I hope they know. They want her to also start physical therapy for her neck. She doesn't have dental insurance so we have to figure that out also. I must say her teeth are not to good now so we will see what she will have to get done. Again thanks for the info and support. Being a caregiver and researcher for her is a tough job

Regarding the dental insurance: I don't have dental insurance either, however the dental treatment your sister might require could be seen as part of her overall treatment plan. My insurance company said they will cover the dental expenses directly related to my treatment. So it's best to check this out with your insurance company, you might be surprised.

Susan,

I think I fell in the middle of what most people go through here. I did not get a PEG. I had minor skin burn (like a sunburn) and only used over the counter stuff (Pure Aloe). I lost my taste but have since regained 95% of it. I never had the mucus issues and they did a great job preserving my salivary glands. I get dry mouth, but not real bad or for long periods. I eat with water around but can swallow almost everything.

I did get some very painful ulcers on the tongue and in my throat at the very end of treatment. I also suffered from a bout of depression about 1 month out of treatment (not like me at all).

So I ran into some of the issues that you can run into but not nearly as many as others. All in all it was a real pain in the ass but I was able to get back on my feet and back to a normal life fairly quickly.

Susan - nothing to add except good wishes and support, as all of these posters have summed it up beautifully.

Has your sister started radiation? How's she doing?

Please keep us informed!

David 2

I wish your sister just the best of everything and remember, we are all different and react differently to treatments.

Hey all!! Thanks so much for the support. My sister is due to start on the 17th. They mentioned doing to Erbitux and radiation for her which she is now considering. They said because of her age they want to be aggressive. She is going to call them tomorrow with some questions for this treatment and then make her decision. If anyone here has any info that would be great also. She did very well when they made the mask and gave her her first tattoo ever. That's a huge thing for her. I think she is finally calming down and being positive.

I hope your sister's first day of treatment went well yesterday.
I was like Kelly and did not have terrible side effects like some people do. I did not have a PEG - I was determined not to. So I drank alot of Ensure, Boost, Special K Protein, Carnation Instant Breakfast throughout the day and my husband made lots of shakes for me to help keep my weight up. They also gave me swallowing exercises and facial exercises to do. I started them before treatment and continued throughout treatment and I think they really helped with my swallowing and tightness of my neck and mouth. I used AquaPhor (over the counter) on my neck to soothe the burning and help with healing. Also soda/salt mouth rinses several times per day to help with mouth sores. Whatever the doctors told me to do, I did. I did lose my taste which was not fun but started regaining it about 8 weeks after the end of my treatment. I can taste most foods now but not as intensly as before. My mouth is always dry and I keep water with me always. I use fluoride trays every night and I have regular appointments with my dentist to keep my teeth in the best shape possible.
I know at first I was hit with everything that possibly could go wrong but it doesn't necessarily happen that way. It's not a fun process to go through and life is different but she will come through treatment and things will eventually get better. Hang in there with her. It really helped me to have my husband with me and guiding me and telling me what I needed to do next because at some point I was just tired and didn't want to think about anything. Keep us posted.

Howdy from Texas! I am meeting tommorrow woth my radiation oncologist regarding my starting IMRT. I had muco epidermoid carcinoma surgically removed 6.18.2010 and had a maxillectomy (all of hard & soft palate), R side lymph removed, and 5 teeth removed. Nasal septum & turbines removed. After 8 weeks post-op I feel 85%. I have trimus, and can stretch to 3.5 with Therabite. I know my situation is nothing compared to some diagnosis here, but I am not looking forward to 30x rads to mouth. I WILL get thru it, but know it will be rough. I have a great wife and kids for support, but know this may be most challenging thing so far in treatment. Any thoughts to mindset and dealing with declining energy and desire for day to day activities. I am a career firefighter, and am off till after radiation. Have a great bunch of firefighter I work with, very supportive. Any help in keeping mind upbeat while body wants to do nothing is greatly appreciated.
Thanks in advance!

Devin,
Attitude is the most important thing and you have a great one. In my experience, the fatigue was not a problem for the first half of my 33 rads. Take advantage of each day and do as much as you can. I played golf, kayaked on the lake, walked, and went to work every day for the first 3 weeks before I had to slow down. Set short term goals of activity, such as the next 5 days at a time rather than the 6 weeks of treatment. Also, mentally prepare for dealing with the pain and effects of the rads to your mouth and throat so that you will be able to change eating habits. Example, I progressed from eating soft foods to fruit smoothies and finally ensure shakes. You will need plenty of protein for your body to recover from the radiation damages and healing. Having said all of that, everyone is different and we all recover on our own body's schedule. Also, most important, I had an army of prayer warriors who held me up - I pray that you do too!

You might want to work for the first few weeks of rad and save that time off for the weeks following radiation. That's where you will feel the effects more. I was weak as a kitten for probably 4 months post Tx. Unless you are a very special person you will be desk bound post Tx for a lengthy period.

Although I have recovered very quickly post radiation I actually started missing work the first week of radiation. By the 2nd week I was out of work and by the third I was in the hospital on a morphine drip. That is NOT a normal experience, I just tend to be sensitive to medicines and I guess radiation. Most people never end up in the hospital due to radiation. Once I was released the finished up the radiation and added some for time missed I had very little problem with the final treatments.
I returned to work Parttime 1 month after radiation and full time after that. Of course I sit all day but I am an insurance agent so I talk all day which of course was difficult at first but improved daily.
I suppose my point is that it depends on how your body handles it there are NO rules and everyone has a different experience.
As to what to do spend time with those kids as much as possible.

I lived on milkshakes. Also, be sure and ask for Mary's Magic Potion, it is a thick numbing solution to take a swig of as needed. It numbs your mouth for a short period but would give me some relief, then I would use the "good" pain meds at night. Do you have your mask made already? That was fun.

Hey EllEll. Thanks so much for the post. I passed all your suggestions on to my sister and she is starting to do some. She did her 2nd treatment today. Woohoo!! She is already counting down on the calendar. She has become upset though that she sees all this people that are so positive during treatment and she isn't there yet. I think she is positive but is scared.
She's very cute now though how she walks around with a water bottle to get those 48oz in. I think she will make it through ok. I keep praying she does. Again thanks so much for your post I saw her confidence go up which is priceless!!

I think if ever there is a time to try to practice One Day at a Time mentality, this treatment is it!!!

I think my husband's attitude went up and down depending on how he was feeling, what his expectations were(he hated feeling weak), how bad the symptoms were,etc.
I think it helped when he started to adjust his expectations to the reality. If he was weak, he needed to rest, if he was grouchy, he was entitled. My husband also got a case of what we were calling chemo brain(from reading about it). He couldn't concentrate, he had a hard time caring about stuff he usually cared about,etc.
As a caretaker, that was difficult to watch. My husband just wasn't my husband for awhile.

But he is back...and I think during the rough times it helps to remember that there is the light at the end of the tunnel. Everyone here kept saying that and it was hard to believe when he looked and felt so crappy.

He just went through his three month mark of ending treatment and ordered lumber to do some stuff around the house. Never thought I'd be so happy to see the guy work on a household project.
It's not all roses...but it does get better and holding on to that thought might really help.

I remember my first week of radiation in 2000. I developed Thrush which was real painful. A dental hygenist and Diflucan saved my miserable butt. I started using Tom's Fennel flavored toothpaste at this time. It is mild and does not burn like the other paste. I still use it today. Good luck to your sister Susan and to you Devon. We are he for you.

Just an update after my meeting with my Radiation Oncologist...She feels the mouth side effects should not be full strength, since they are shooting higher than first thought. Basically, they are shooting from my mustache up to my sinuses. Hopefully, the saliva production and taste loss should be minimal. She is of the opinion I should really do well.....
I hope she is right. I wish I could work until I feel worse, but I'm off till cleared to fight fires again. I start 30x rads Wednesday the 25th, and should end Oct 6th, just in time for Halloween and my new IMRT mask costume! Watch out kids!
Can not say enough about the firefighters I work with....I have had my Lieutenant, other LT's, other firefighters, and even my Captain work on their off days to slow my burn of sick leave down. A humbling experience to benefit of kindness and love from so many. I promise to fight the good fight!

Just an update from Texas....3 rounds down, 27 left
Wednesday, the first day was hell. As a firefighter, I have spent ALOT of time in various masks, and enviroments, but experienced my first bout of claustophobia. They had to let me up, get a drink of water, and try it again. Found out my obtorator was blocking airway when lying flat, and trying to breath with mouth shut was almost too much. Got thru it day one.
Went to my dentist and we ground off alot to open airway when lying flat. Had staff at oncology make me a "blow hole" at nose and mouth, and I now take a ClonazPAM 0.5mg 1 hour before, and chase it with Lorazepam 0.5mg 15 minutes before treatment. The results were magical, and Friday I lost count of each exposure during treatment. (I think I dozed off). If anyone is struggling with getting locked down in the mask, try what I did, it made ALL the difference in the world! I start week 2 and treatments 4-8 this week. Now just waiting for the side effects to show up. Hope each one of us enjoys another weekend of God's grace! Keeping an open mind on how to make things better!

Wow, Devin - I'm so glad you were able to make things better and that you got the good results you did! And how great your dentist was able to help you to open an airway to make you more comfortable inside your mask. I've been away from this forum for a while having just recently come back again and I continue to marvel at how courageous people are and how they find ways to make things better. It just goes to show that - there is always something you can do about whatever situation you are in. I'm sure your post will be a source of encouragement for others going thru treatment. Hope the rest of your treatments continue to go as well. Keep giving us updates.

Devin,
I am really impressed with the way you are handling your treatments so far. I never had much of a problem with the mask, but other people do and unexpected things jump up and bite us, like your airway blockage. You set an example of how we have to deal with adversities of oc treatment by taking action. I suspect that through your background as a firefighter you have encountered situations that required improvision and endurance. I am also very pleased but not surprised that your fellow firefighters are rallying to you side with support. This support will mean more than you imagine in the weeks to come. I like what I read from your postings and I know that you are going to do fine. Take it day by day and keep us informed as you feel up to it.

Hello all! Just wanted to give an update and try and get some feedback. We are on rad #14 on Tues. 16 more to go!! My sister has become alittle depressed which she talked to the social worker about in private. I am not to sure what that outcome was. She has about 2 sores on the inside of her lower lip. About 3 sores on her tongue. The mucus is getting alittle thicker then normal when she eats certain things.
Today she woke up with her voice very raspy which got her nervous( she thinks the radiation is directed on her voice box now and not where it is suppose to be). She is worried that she will not have a voice now throughout the rest of her treatment. So needless to say today was a difficult day with her emotions. She was saying how she wants to quit the treatment and things like that. I didn't argue with her I just let her go and rest and hope tomorrow is a better day.
She has been good with keeping up with the things she should be like rinses, floride trays, creams, eating and walking. The dr's gave her a mouth rinse with alcohol in it that really bothered her so she is now doing the baking soda and water and rotating with the biotin.
I was wondering if anyone else lost their voice and what they did to help it. Also how long did it last?
Thanks for any help you guys can offer. You have all been a true blessing for me and have helped me through so much. I do not know how strong I could have been without your support. Hope everyone has a great holiday weekend.

Hi Susan - Seems like most people do get depressed during treatment. It's a pretty tough road to get through. My son was on depression meds and there were still days when he was really down. As a CG it is dfficult to know when to be gentle and when to be firm. Certainly, anything your sister is concerned about should be brought up with her doctor just to ease her mind, and yours too. My son resorted to an improvised form of sign language with me and "saved" his raspy voice for when people came to visit. But the voice did come back and he's fine, now. Re the mouth rinses, there are several different types. My son used the Magic Mouth Wash and several others and it seemed that they would work for a while and then not so well he would come back to one of the previous ones he had used that worked again! Everybody reacts differently so if something doesn't work, it pays to try something else.

What doctor would prescribe an alcohol based mouthwash for an oral cancer patient, much less someone in the throws of Tx? That's got to be one of the dumbest things I've read since I've been on this site!!!!

OK back to reality....first off I know you have read many times that each of us can react differently to this Tx so what she will encounter and deal with is a product of many many factors. I didn't loose my voice until the very late stages of Tx and I only lost it for about a week. I didn't get depressed ( maybe to stupid to ) so I can only add that some have taken feel good pills during and post Tx. IMO anything that helps one get thru this Tx should be tried sepecially if she has thoughts of guitting all together as that surely would mean death.

Keep her doing everything else and encourage her to maybe visit this site. Seeing that she is reacting just like most of us during Tx and therefore feeling normal goes a long way to balance our mental fears which can lead to depression.

Hey David. I remember u saying that you did the radiation without a peg. Do you have any suggestions on how she can eat or what she could try. It seems like that alcohol mouthwash she used for a day made her sores extremly bad in her mouth. Her lips and tongue are swollen and really red. She has sores everywhere in her mouth now. Anything she puts in her mouth hurts. Her eating has declined rapidly. She is seeing the dr tomorrow but are these side effects normal or alittle extreme? She really doesn't want to continue at this point with radiation and I am at a lose for words of encouragement. Only because I do not know if these side effect are normal. Any information would be so helpful. She is almost done. She has 13 treatments left. Oh and what do you think if the dr's give her a week off from radiation? They were contemplating doing that. It seems to me that on her off days is when the sores get worse. Again thanks!! Hope you have a good day.

This is about the point at which the sores in my mouth, and the morphine I was taking for them really knocked the wind out of me. I was ready to give up. What the is experiencing is normal. The alcohol mouthwash didn't help things, but the impact of that probably hasn't made things worse in the long run. I would opt for not stopping treatment. While it is done in extreme cases, in mine they opted to just up my pain meds, and of course I was already eating on a PEG, so nutrition was being taken care of without additional issues with putting food in my mouth. Chilled canned peaches.... that was all I could do. Two weeks will seem like an eternity to her, but most people getting high dose radiation have a hard path in the last two weeks. This is the point at which my wife became the strength that I did not have, and only her pushing me one day at a time, kept me in treatment.

Thanks so much for the reassurance Brian! I just went from being discourage on my last post to determined on this post..LOL! I believe they are not going to give her the last Erbitux. Starting tomorrow I am going to take over to main caregiver. My sisters husband who is now the main lets her get away with things as far as not doing rinses and not drinking her shake. I am going to try and get her into a routine for everything she has to do for the next 2.5 weeks. I was also wondering if there is like a protein powder that dissolves in water. Almost like benifiber does? She can handle water pretty well so maybe I can find something for her to take that way. Off th GNC I go tomorrow.. I will post what the Dr's say..

Susan, my husband's voice was quite raspy. Sounded like he didn't have one for a bit. Truthfully, it's so back to normal that I forgot about that until I just read your post. He also (like I'm betting a bunch of folks) got some nasty sores from the treatment. They also healed but that took awhile. The cans of carnation560 (he had a prescription version that insurance paid for) were invaluable. For awhile it was all he could get down.

You may want to speak to the social worker to be sure she has a good sense of how your sister is feeling. Sometimes,I get very valuable info from the families that really do help me treat the patient better.
Keep in mind though, that it is also so normal to be discouraged and want to stop when you feel so crappy. Just as long as she keeps going...
And,of course, do what you can for yourself. It's so hard to see and hear someone you love so down in the dumps.

Ask her doc about "magic Mouthwash". They all seem to call it the same but vary somewhat in the ingredients they want included.

Get her some Carnation Instant breakfast VHC (stands for Very High Calories). Must get it from a pharmacy like Walgreens, CVS or on line but no prescrip is needed. The benefit is it has a whopping 560 Cals in same 8 oz can so she has to drink less to get the needed daily cals.

You may want to inquire about the nasal tube. No surgery and the food/water will bypass the throat so the pain will not be an issue.

Also get her some effective pain meds. Ask about the Fentanyl patch.

Above all keep her goal of finishing this Tx ever present.

When Alex was first diagnosed, I jumped on the phone to the only other person I knew who had suffered through oral cancer and chemoradiation (didn't know about this website at the time). He was in a different country and had different names for things but alot of what he told me was relevant.

The lesson that stands out most strongly was the assurance that we would have days or even weeks when Alex would either threaten to or actually refuse treatment. His advice was to gently probe for the reasons which may not be obvious to Alex himself. So questioning would be non confrontational or accusatory, a little bit airy fairy and VERY gentle (this is definitely one time when nobody expects a Spanish Inquisition). Another respected person to have a chat other than the caregiver may also be a good idea as the new perspective may uncover things we haven't considered. For my friend and for Alex, it turned out to be pain (bloody men). As soon as this was communicated to the doctors (after overriding Alex's stoic but unhelpful "not too bad" response)the pain meds were changed and or increased and treatment continued until the next barrier was encountered. Depression was the next thing caused by one of the pain meds (morphine) so that was changed.

Don't know if this is where your sister is at but at least it gives you something else to try.
Karen

I at times feel my Drs were overly agressive. Especially with the Rad seed Implants. Pain meds help, but there is ever present pain , even when I was taking 4 pain meds plus Fentanyl Patches. I tossed everything but the Methadon and Percocet. My pain team doesn't like my doing this, but at least I control this body and not science. Oh for a piece of bacon or even a burnt steak. LOL

Hello all. Just an update. My sister was admitted into the hospital today for dehydration and a possible infection in her throat. UGH!!! She will most likely be getting the PEG and will have a week off from radiation.

David- You did this without the PEG right? You are one strong person!! Her mouth looked like someone put acid in there. I don't know how you could eat like that..

Well hope to talk soon..

Aw Susan I hope your sister gets well soon,
I'm sure her doctors will take care of this bump on the road.
Best wishes,

Susan,

I made it thru Rad without feeding assistance if that's what you want to call it loosing 30% of my total body weight! lol but I reluctantly agreed to let them put in a nasal feeding tube during my first week post Tx and it really helped me. Probably saved my butt. I kept it 2 weeks and actually pulled it out myself. The advantage of the nasal tube is obviously no surgery as they just feed it thru your nose into your stomach. I didn't mind it at all.

Susan

I hope your sister is back on track quickly, so she is able to finish treatments and then onto the recovery stage.

There are many people who didn't have a PEG, and many who did. Your sister has also had surgery on the area that is getting radiotherapy. Surgery in itself is extremely difficult. Some patients haven't had surgery before radiotherapy and/or chemotherapy treatments.

With this disease and its treatments, everyone is different. It depends on what areas the radiotherapy is being aimed and also how much each individual is getting. Every treatment is different. If your sister needs assistance in getting her nutrition and keeping hydrated, the PEG is a tool to assist with making these brutal treatments on her mouth just a tiny bit easier.

Take care

Karen

Susan, hope your sister feels better soon. I also ended up being hospitalized for dehydration and malnutrition when I went thru chemo/rad. She must get 48+ oz water and 2500+ calories daily or she will feel awful. Once she gets the peg tube it will be easier for her.

Not one person here who got a peg tube wanted one. Its something that everyone struggles to avoid, but it is necessary for most of us. Very few have goten thru this without some type of feeding assistance. The tube will make it so much easier to count the calories and water comsumption. Try to encourage her to still do as much by mouth as possible. Even drinking water a few sips at a time will keep the swallowing muscles active. Its more difficult to relearn how to swallow later.

Best of luck to yoru sister.

Thanks so much everyone. She had the Peg put in today. She is still going to be realeased on Saturday. I just hope I can figure this new caregiver duty out. I think it was you Christine who told someone to get the pump so I asked the dr's for that. When she had the NG tube after surgery she became very nausea when they did the syringe feedings. So I remembered that helpful hint. I also ordered the carnation breakfast vhc for her previously. Can I use that in the peg? She still has 13 treatments left so I really hope this helps her out. I don't care at this point if she sleeps most of the time. Lol! I feel like asking the dr's can we just knock her out for the rest of the time because she is in a lo of pain.

Another update (or downdate) from Texas:
16 treatments in out of 30....Had to have surgery last Tuesday to have a tube put in my R ear to let it drain (radiation has eustation tube messed up) and have now noticed my taste is getting muted somewhat...Doc assured me tongue was NOT in IMRT fields, but techs confirmed my fears today, tongue is getting hit at least 3 different times. (Another reason to give nursing staff and radiation staff weekly candy treats - when you have a question..they are prone to help you out) I am loosing my sense of taste, and lost 3 pounds this past week. I'm sure Doc is going to get on me tommorrow about weight loss, but I'm only
-4.1 lbs since starting 3 weeks ago. I'll be honest, I guess it's Ensure from here on, since it has some taste, and nutrition value. Any suggestions on how to keep spirits up when I won't be able to taste my 12yo's upcoming birthday cake.....I know I'm there, and that is all that counts, but this was one of two big things I didn't want to happen. PEG being the other. Any thoughts appreciated! Still fighting the fight! Like the good soldier I am, I'll trudge on, and get to the objective...I have just lost my supply of MRE's and are on K rations from here on out. (You service people know THAT difference)
only 14 treatments left!

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You can order it thru your pharmacy dept but you don't need a prescrip for it but some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only paid about $32.00 per 24 can case at Walgreens. That's only $8.00 a day for 3360 calories. You can also order it online from Amazon and if you go thru Oral Cancer Foundation we get a kickback.

I lived on that stuff well into my 2nd year of recovery. During Tx that's all I drank, other than water and post Tx I drank a can mixed half and half with whole milk with each meal to make sure I was getting all the calories and nutrition I needed since eating was soooo boring.

Susan, mix the carnation vhc with a can of water. I use mine with a can of carnation, a can of the prescrition kind and 2 cans of water. Raise the head of your sisters bed up and have her sleep propped on 3 pillows. Set the pump for 40 ml per hour, which will take forever to run. After a few days if she is feeling ok with the 40 rate, move it up to 60, then 80 etc til you hit about 160. If she gets ill, back it down and gradually build it back up. It takes alot of playing around with it before you will get the hang of what works. The syringe and graviy methods are too much for me to tolerate, Ive never been able to use those. Glad to hear I was able to help you with peg info.

Thanks so much for your help! I don't know where I would be without you guys.

I didn't have a PEG put in. I drank Carnation Instant Breakfast (just the regular powder packets), Ensure, Boost, Special K Protein and was able to eat and taste (somewhat) oatmeal, scrambled eggs, mashed potatoes, vegetables and of course milk shakes. The only meat that still had taste for me was liver - I liked liver before diagnosis so I ate it once in awhile. I still drink Carnation Instant Breakfast every morning. The most weight I lost was 9 pounds.