just reread your original email and realised your husband is not even on a high energy drink. Get your dietician to prescribe Ensure Plus. It is not available to the general public and you have to be registered with the company who makes it for you to buy it. Once registered (your dietician should do this), you order a month's supply at time and they deliver to your door. Can't remember the cost but it is cheaper than buying all that food to tempt your husband and MUCH cheaper than Nutrison if you end up with pump feeds. The ensure plus can also be administered through the PEG but do it slowly at the same speed as if your husband were sipping it (avoid bloating and subsequent refusal to take on more). Suggest 50 mLs, wait a few minutes then another 50mLs etc.

This should supplement whatever your husband can take on and can subsitute should he become unable to eat anything. My Alex has 7-9 Ensure Plus's per day and it is his only means of nutrition (number 8 and 9 are a struggle though).

Karen, great catch. There are also other ways to "beef up" the calorie intake too when using Ensure Plus or Boost. Using a healthy oil like Olive Oil to help increase calorie intake. Olive Oil is a long chain triglyceride that is great for energy, has 14g of fat and around 140 calories per "tablespoon" so it doesn't take much to get more calories packed into the liquid nutrition.

If his appetite won't increase get more calories in each feeding session by just adding a couple of tablespoons of olive oil to it. I've given this advice before and even use it as I have issues keeping weight on so I put OO in my shakes. It has other benefits to it as well like promoting testosterone levels etc...not sure why I didn't think about that in my first post.

Get Carnation Instant Breakfast VHC if you can via the internet. Each 8oz can has a whopping 560 cals and he needs to down 6 of those a day PLUS 6 of those cans filled with water. He needs to do both EACH and EVERY DAY until months post Tx. If he doesn't many other things can happen that will make this treatment much worse than it needs to be.

I think we all went thru hell. Look up some of my postings, I sat here on the phone at work to the Dr's office crying that I think he is going to die, Ron lost so much weight, he was already tall and thin but had muscle mass before this. He is 6'2'(yes eyes of blue!) and healthy he weighed 189. Now he is only 132lbs and he thinks that is great, he actually came out of the shower with only a towel on in front of my kids and inlaw kids and wasn't embarrassed, but my goodness he is so thin but he's alive! He didn't have any feeding tube even though he had an NG twice and took them out himself cuz it hurt his throat, and he refused to get a PEG and I just couldn't believe the docs let him go without one for all his treatments but I guess they figured he is doing fine seeing he is driving himself to and from Rad treatments til the final one. I just didn't understand but he made it. And believe me I "B"tched him out daily to no avail. I finally had to leave it in his and HIS hands and take care of myself and yes that was with Xanex just to take the edge off. Now he still has alot of paid due to the dead bone in his jaw but first we are taking care of the spot on his lung before that gets handled, but he is alot better and eats alot more than he did 2 yrs ago. Guess he was lucky not ending up in the hosptial is all I can say, seeing everybody else who lost so much weight ending up in there. Ron did have those drinks though maybe that's what kept him out of the hospital specially the 560 Carnation
Good Luck and take care of you too!

Thanks everyone. Karen, you mention a high energy drink -- are you meaning something besides Jevity and TwoCal? We have some sample packets of Ensure plus. I'll try to get him to sip it.

He's still able to eat, as in his throat is sore, but issues with texture, spice/salt, etc are cropping up. Saliva issues are coming into it now, too. He just doesn't want to eat much because of nausea and now indigestion. He was prescribed Losec yesterday and indigestion is somewhat improved today. He takes maxolon regularly and has ondansatron but isn't using it. He's also got Emend, the three day course of antiemetic he gets after weekly chemo.

So the reasons for not eating have been 1) Discomfort and nausea post PEG insertion. PEG has been loosened and site less uncomfortable. 2) Nausea post chemo. Have full compliment of anti-emetics, one of which has only been used sparingly. 3) Indigestion. Losec should help. He is open to increasing his appetite and decreasing nausea via whatever means necessary. Exploring all options.

Last night he steeled himself up for dinner and after a couple of bites he looked disappointed and mildly confused. He complained about a funny taste. He tasted something else on the plate and it tasted funny, too. Metallic, I asked? Yes, said he. Side effect, I told him. He doesn't want to read ahead about any of this and relies on me to let him know what to expect -- understandable, although not how I personally would handle it. He just seemed so disappointed. This disease makes a person sad in a thousand ways.

He said before bed last night that he would start using the PEG suppliments today but it is after lunch and the cans sit unopened on the kitchen benchtop.

He's bitchy today. Day 3 post chemo is usually the start of 3 bad days. The radiation is kicking in, too. And a bit more hair than usual came out in the brush. He said something about feeling pretty low mentally which is not the sort of thing I would have expected to come out of his mouth. This is only the second bitchy day he's had since this whole thing started back in October. I have to admire him for that. Today I promise myself I will be the even tempered one.

Eric, you put it so well when you acknowledged both sides. Karen, I have no doubt that what he is feeling is completely in the range of normal for a person in his position. I had dreadful morning sickness during both pregnancies and let me say that there is no way on earth I would have had a third child. And that experience is light years away from what the oral cancer people go through. LIGHT YEARS. I know this is the best he can do for right now but it scares me so. Christine, I know, I know, I know. His healing depends on nourishment and there will be no makeup days. I'll call a friend of his today who had RT for oral cancer to enlist support. Thanks again all of you. I may not have specifically referenced your reply but I'm taking it all on board. Every single thing.

Take it day by day. You are doing the very best job you can do. Being a caregiver is very difficult. I dont think I could do it. You have to wear so many hats that when would you have time to catch your breath? I hope you are able to set aside a few minutes every single day for just yourself. Its a very rough path you are on and you need your strength and the patience of a saint. Even if its for 10 minutes to walk around the block, have an uninterrupted phone call with a friend, go out to lunch, or soak in the tub (or since you are in Australia to take a cold shower to cool off) We patients know all too well what our caregivers endure, so a big thanks for what you do!!! Hang in there, we will be here to help.

Oh I get my "me" time. Rick is very conscious of my need for it and the kids accept that's just the way it is. When he was first diagnosed I was wound pretty tight. I threw away the cigarettes the day after reading the CT report. (He quit many years ago.) Did I miss them? Not in the slightest.

A week or so later I went to the local pool for a swim because I find water relaxing. I still wasn't ready to come home after my swim so I went for a walk on the beach. I wasn't ready to stop when I got to the end so I continued up the track at the headland. I went up to a lookout, one that I had been up to in the past. Although I was out of breath, it wasn't unpleasant like it had been the last time I went.

I have continued exercising as a way to cope. It makes me feel powerful and in control. It is a guilt-free escape. And I'm finding the hills don't seem very steep and the ocean doesn't feel as cold. I am choosing not to be bothered by some things anymore. You might want to check back with me in 5 years but something fundamentally changed at 3:25pm Tuesday October 25th. For better AND for worse, I will never be the same.

I know what you mean Laura. I said to someone yesterday, that I feel like I have been holding my breath for 7 and a half months.

With regard to the peg again, Simon empties out half the can (he's on Ensure Plus) then fills it up again with water. Then has the other half with the same amount of water also, so for every 250ml of food he's also having 250ml of water. It helps to get in the 2.5 litres of water he tries for each day. It also helps with his indigestion and allows the food to flow through the tube more easily.

His PEG was put in at the beginning of 7 weeks rx. He is now 7 weeks post rx and I can't see him getting rid of the PEG for at least another month or two. He can eat, but he says food tastes very average indeed, so the PEG is helping him to stack on the weight.

Hi. Boy have I been where you are. It is so extremely frustrating! My husband refused to have the PEG put in when we initially met with his doctors. His ENT, RO and MO all insisted and John agreed but swore he wouldn't need it or use it. When things started getting really bad around week 3 he started to use it a little but not as much as he should have. He continued to loose weight and feel lousy. He was on both Zofran and Compazine for the nausea and gagging. I finally sat down with him one day after many days of bribing, begging etc. and explained to him that his body couldn't fight the way it needs to without the proper hydration and nutrition. Luckily that seemed to work and he started using the PEG. Even with the PEG in he lost 30 lbs. John hates hospitals and I think the thought of having to be hospitalized for hydration or nutrition also got him using the PEG to avoid that.

John hates pain pills and got through treatment without any but the PEG was a lifesaver. He had the PEG removed 2 1/2 months after treatment ended and has regained all the weight he lost. We are here for you!

Hi there again. Tell him the hair thing was the most disturbing thing for me being a woman.. I lost all of it from almost the top of my ears down to my nape and it thinned all over my left side - I looked funny! And my ponytail was anorexic in a big way! This was all due to rads - being a man is a little better because he can shave his whole head to match! at some point food becomes unpalatable - I mean completely - pop tasted like turpentine, etc. he needs to look at it not as a pleasure to eat but a survival tool. Seriously I tried soups etc, up to week 4-5 then I gave up and went for bland and just chugged my ensure plus (I changed flavors frequently to stave off boredom) . Since he's a man and needs more - calories -the carnation is right for him. Flatten club soda - let it sit on the counter... If he's drinking water it's likely most comfortable Luke warm, have him down a glass of this. It helps heal. And because you can drink it it's hydration. Post chemo there are several drugs he has to take up to day three then his breakthrough antiemetic if needed-- maybe try having him take it half an hour before he tries eating. And taking meds on an empty stomach can contribute to nausea, so maybe if he even takes a mouthful, if he has to have a pain med. I remember the feeling of not wanting to eat but I forced myself - I was my own caregiver despite being married. Since my husband works long hours and didn't know what to do for me. Plus I'm just like that... I know what has to be done so I suck it up and do it! And I want to be left alone when I feel crappy. good luck! Hopefully something will work. The drugs and the treatments are poisoning him, he needs nutrition to fight back. Take care and do take a mental health break!