I'm new here but I need advice.

My mother, who is 75 years old, just completed radiation/chemo and is back home. At first she was on a feeding tube, but that has been taken out.

She won't eat.

She keeps saying that nothing sounds good to her (no taste, saliva, etc..). Plus, everytime she tries to eat, the pain is unbearable still. She is also consuming very little fluids.

We don't want her to have to get another feeding tube, as she kept having trouble with it staying in and the hospital is not closeby at all.

She's also very depressed right now, talking about wanting to go *home* (heaven). We think that, in a way, the not eating is part of this also (the treatment was SO hard on her).

I don't know what to do. I would appreciate any and all words of advice or what brought anyone else out of this period of their treatment--coping skills would be great, or methods of alleviating the pain (the numbing mouthwash is too painful to even put in her mouth, she claims).

Thank you so much.

Hi Sarah'sDaughter,
She should have more for pain then the magic mouthwash.......is that all she has? If so, you need to call her doctor and demand pain control. There are grown men on this forum that used strong pain medications for months after treatment ended.
Her depression at this time is very common. She is done with treatment and now may feel like she isn't doing anything to fight the cancer. Almost all of us on here had depression at the end of treatment. Medication can also help get that under control.
Why did they take her feeding tube out?? I had a feeding tube and didn't have it taken out until almost 7 months after treatment had ended. And I used it up until they took it out.
Please let us know a few more details.
I will keep you and your mother in my thoughts today.
Minnie

Minniea-

What type of feeding tube did you have (nose/directly into stomach)? Were you able to feed yourself via the tube, or did you need help? My mother had one in the nose and we had to keep going over to her house to do the feedings. We hadn't pushed for her to do the feeding herself because we figured it wasn't something she'd be able to do, but maybe she could?

Also, my mother keeps refusing any pain meds, for fear she'll become dependent. How much of an addiction could she acquire? Isn't she being unreasonable for only being out of treatment one month? She was also upset at how loopy the meds made her. She didn't know what she was doing half the time and it was very distressful for my father, who kept threatening to put her in a nursing home (not that he's a mean husband, but she was really quite dangerous trying to leave the house, pulling out her own feeding tube because in her loopiness she didn't know what this thing was that was hanging from her nose). Do you think that if she took the pain meds in lower doses she might be all right? (Previously, she was taking 1 tsp of oxycotin overy 4 hours, per doctor's prescription).

Her doctors are 3 hours away, making this whole experience feel like we're "going it alone." Thank you for responding--just your few words has really opened my eyes to what might be the problem (she and us are expecting too much after such a short time, she needs a feeding tube, pain meds may be a necessity).

BTW, hers was a T2N3M0 on the right side. She'll learn in a couple weeks if the treatment worked.

Hi Sarah's Daughter,

Welcome to this site -- I know you'll find a lot of helpful information here, not only on this forum, but on the many reference sections that you can access from the home page.

I agree with Minnie that your mother probably needs more for the pain than what she is using. Many of us can relate to the fear of addiction that she apparently has, but the fact is that radiation can produce such painful side effects that some type of medication is usually necessary to help cope with this. If she doesn't react well to one medication, please insist that her doctors try something else until you have a program that works for her.

Nutrition is also an ongoing challenge after the end of radiation. The general rule of thumb is that you should expect one month of recovery time for each week of radiation, although different people may vary from that one way or the other. The point is, if she just stopped radiation, she likely won't begin to see noticeable improvement for at least several more weeks. In the meantime, she needs to get regular meals in whatever form she can tolerate -- whether it's the tube or ingesting soft (drinkable) meals by mouth. Everything tends to taste terrible for weeks after radiation, so she can't let her taste buds control what she takes in. She also needs to stay as hydrated as possible -- I know it's hard because I remember how I screamed even trying to drink water at that stage.

Another risk in the weeks post-radiation is mouth sores that can lead to infections (this will only exacerbate the pain). Please be sure her doctors have told her what signs to watch for so if she needs medication to counteract it, she can be prepared.

Please stay in touch and let us know how she is doing.

Cathy

Hi Sarah,
If she were my mother, I would first address the pain issue. If vicodin isn't working for her, then her doctors should have tried something else long before now. Call them and DEMAND that they find a protocol of pain management that will manage your mothers pain. If they don't take action, call a different doctor. Once her pain is under control I am quite sure she will feel worlds better and then she can focus on her recovery.
Second I would take care of her nutrition problem. I cwas 41 when I had my radiation treatment, over 30 years younger then your mother, and was in excellent condition when I received my diagnosis of cancer. I couldn't eat enough by mouth to keep my nutrition level adequate for MONTHS after radiation ended. She needs good nutrition in order to heal so I would look into a tube for her. I'm really surprised that her doctors took her tube out so early, and more surprised that they didn't put in a PEG (stomach) tube before she even started radiation treatment. She should be able to handle feeding herself with the tube, either type.
Third, I would address her depression.
It's alot to think about and alot to do, it takes patience to get through it all. But it can be done. You are your mothers advocate right now, a tougher job then being the patient in my opinion. Call the doctors, remind them that they get paid to take care of your mother, and demand that they do their job.
You're in my thoughts.
Minnie

Sarah's daughter, I'll agree with all of the above and add that the depression should be addressed at the same time because it will affect her willingness to fight (or eat). Eating when it hurts is not easy. Pain control is essential. INSIST that they find a combination of pain medications that do not make her "loopy"! Be polite but completely firm with her medical care givers that pain management is your highest priority! Addiction is NOT a common problem and if it happens that can be addressed later.

Let her know that there are people out here whom have been exactly where she is and are now fine. There is light at the end of the tunnel. The period right after radiation ends, is the worst and she should notice improvement soon. It will be slow but it WILL happen. Some here had prolonged pain and difficulty eating. Others (like me) were able to eat fairly soon. For me I used a blender to liquify everything and make it go down easy. Radiation affects both the appitite and the taste of food. This effect goes away fairly quickly. I remember gaining an appitite within weeks of treatment end.

Be on the lookout for Thrush which is a common yeast infection in the mouth and oral spaces. A high percentage of oral cancer patients get this because of the low saliva. It can cause pain, usually a burning sensation. At first her pain might be discounted as normal radiation effects. Sometimes they will ignore the possibility that the pain is really caused by the Thrush.

While I agree with Minnie that nutrition is important, I would not second-guess the tube feeding yet. Get her pain under control and use a blender and she should be able to get good nutrition. Baby food is another good way to get her eating. Another really important thing is hydration. Make sure she is drinking plenty of fluids.

Hang in there for her she needs it and you are doing a great job.

Sarah's daughter,
I would immediately call the doctor and insist on a PEG tube. How can one hope to recover without proper nutrition. I also used the tube to inject pain med if I needed more than just a duralgesic patch and once I got off of the patches. Like Minnie, I kept my feeding tube for many months (10), after treatment ended because I could not get enough nutrition through the mouth.

Best of luck,
Danny G.

Sarah
PEG tube, only way to fly....I still have mine 9 months after treatment.
As for the pain, there is no need for anyone to suffer.....
Morphine, Morphine and more Morphine. Do not worry about the addiction factor, it is not that bad, Just a few miserable days then it's over.

I could have gotten through radiation treatment and the weeks after without a PEG..........I'm tough as nails and if I HAD to I WOULD. I just question the strength of a 75 year old woman?? I have often wondered why I was able to ditch the pain meds the week I was done with radiation, while others stayed on them for a few months after treatment ended. I think the answer is that I did not have to go through the pain of trying to get my nutrition by mouth. I never mean to imply that the PEG is the better way to go, I think it's the EASIER way to go.
If Sara's mother was my age (43) I wouldn't suggest the PEG as strongly. But this is a 75 year old woman who needs all the help she can get with nutrition. Sorry Mark, love you much, but I have heard grown men speak of the pain when they tried to eat by mouth. Sara's mother doesn't need to endure that if it's avoidable.

Since to the best of my knowledge none writing up to this point are medical professionals (including me), and since none writing up to this point have any first hand knowledge of this patient, Why are there suggestions that we know more than her doctors?

We all know about our particular love hate relationship with PEG tubes, but really should anyone be making this daughter uncomfortable with the medical professionals' decision?

I have had first hand conversations with full-grown women describing the pain they endured from the installation of the PEG tube, and the ongoing pain, loss of normal body image, prolonged return to a more normal life, inability to feel able to carry on a love life, infections and odor problems. All needless additional forms of suffering if she is able to control pain well enough to swallow.

My case is rested.

To Sarah's daughter, please don't worry about this particular subject matter. PEG tubes have been argued about here before and we do try to be civil about it. Generally supporters of PEG tubes are folks that had them, and the folks that tend to be conservative about them are the people (like me) that got by fine without it.

If her doctors decide your mother needs a PEG I'll be fine with that.

Mark is right, none of us are doctors. But we all have information and opinions to share and this is not the first time we have questioned a doctors decision.
What makes this forum so valuable is that you can get information from both sides of an issue. You can gain knowledge to question your doctors if needed. Many on here have gone through misery because of an unskilled doctor.
We may not be doctors but I can promise you that there are doctors out there that are making mistakes with oral cancer patients.
There is no arguing here, that only happens when we are trying to convince the "other" side that we are right. I'm not trying to do that, I'm trying to tell Sara's daughter my opinion and what I would do if this were my own mom.
Mark, you make valid points and I have learned alot from you.

Sarah's Daughter,

Welcome to the neighborhood! I am really sorry to hear of your mother's challenges and I know how difficult it must be for you and the entire family. She sounds like a very strong-willed and determined lady and I am glad to hear she has endured the chemo and radiation. Those both are very tough on the mind and body, especially radiation to the neck and what it does to the throat and mouth. Be sure and congratulate your mother from all of us who know from experience how tough a road she has already traveled.

Your situation is so difficult because of your mother's age and the "toughness" that people of her generation grew up with. I have a relative that age that has only been to the doctor twice in their life because they didn't want to bother the doctor who already had so many patients that were much worse off. That is just something that one must be sensitive to when we look at what we want to do versus what they want to do. I once read in the Wall Street Journal a full-page ad that started out..."You can lead a horse to water, but you can't manage it do drink." As much as you want to help your mother, in the end, her wishes are the most important.

As difficult as this seems, it is somewhat easier (and more manageable) to sit down and discuss with her exactly what she wants out of this. She is at absolutely the worst part of the treatment from both a physical and a mental perspective. Encourage her or read some posts to her from people who know this from experience or have been by the side of someone going through this. Acknowledge how rough we know it is right now. Get her to communicate what she wants. Obviously, the loopiness of pain meds is a fear everyone has and it sounds like your dad also is worried about it. There are alternatives. The Duragesic patch, for example, is intended to release doses of pain meds over time and you change it every 3 days. My personal experience is that life was much clearer while the pain was controlled quite well. The meds she is on right now are intended to hit quick so she takes it every 4 hours. This would cause her to be in somewhat of a daze all the time. Morphine, oxycontin, etc., make me very loopy and I do not like them for that reason. While on the patch, I could drive, work, reason and generally function fine once the body gets used to the dosage. I upped it until the pain was barely noticeable and as it decreases over 3 days, you can taper off gradually or even keep the patch on more than 3 (5 or so) and it has the same effect of decreasing the dose without withdrawal effects. Studies have shown that few cancer patients experience addiction when the drug is given for intense pain.

I would suggest sitting down with your mother and making a list of everything that is concerning her right now. Try to pick one thing out of the list that will give her the most satisfaction if it dealt with. Stay with it until it is resolved. The list will grow shorter and soon be very small.

Get your mother on some type of home health care. They will send a nurse, aides, etc., have access to doctors directly for pain management and generally bring the care to the home. That is what they are designed to do and especially so far from the doctor, it will work better than running to the doctor 3 hours away.

Break the tasks to do into smaller pieces and it won't seem like such an overwhelming amount of stuff to deal with. Nutrition and hydration are of the utmost importance. Nutrition is needed for the body to heal and dehydration will make all the side effects of chemo and radiation much worse than they need to be.

As far as the tube thing, if she doens't want it, that is pretty much her decision until the doctors have to convince her she will not live without nutrition. There are ways to help without the tube, provided her nutrition is managed properly.

Hang in there. You have a big load on your shoulders trying to help your mother see what is best for her. She is so fortunate to have you helping her and learning all you can to help her more and better. Ask in questions but take only the size bite you can chew comfortably. Take time for yourself so you can be all you want to be for her.

Ed

Any doctor that has his head on straight is not going to let the patient make the final decision about the PEG tube. At MDACC once you loose 10% of your body weight, you are going to get a PEG and that is not up for discussion. Nutrition and hydration are vital to recovery and if she is not getting them, her health could be further compromised and she could be open to serious consequences. People on this board have gone into physical shock and worse from lack of hydration and imbalances that it causes. Your body need nutrition to rebuild and to fight off all the opportunistic things that will want to take hold while in and also after the treatment. I didn't want the tube, and didn't like the whole idea, after getting it I realized it was no big deal to get it put in, and I certainly would have never made it through things without it. I ended up on it for almost 14 months.

Thanks so much to everyone for your kind and helpful replies.

My mother's doctor's appointment is next Monday and I've printed everything out for consultation with the doctors.

On a good note, my mother has actually been pretty cheerful the past two days and trying to eat. She was able to eat an egg the day before last, though one egg isn't going to sustain her, it's a start at least.

Also, I printed off several posts from this site on the day I made my original posts and gave them to my mother to read. She said they really helped her and made her realize that there is a light at the end of this tunnel. So, on her behalf, I want to thank all of you for this forum and for your wonderful insights.

Sarah's Daughter, Thank you for that little bit of good news!

Brian, that 10% number can't be universal as I went from 185lbs to 155lbs (about 18%) under the care of both the radiation oncologist and the nutritionist. A tube was never mentioned.

Sara's Daughter, that is AWESOME news for your mother. One egg isn't enough, but it's a pretty good start and hopefully she can keep improving with her eating. Let us know how her appointment goes.
Minnie

Sarhs Daughter,

Good news that your Mother ate and is in a better mood.

I had a PEG tube in for about 7 months. Never had a problem with it. I gained back the 25 lbs. I lost during treatment.

She needs alot more nutrition right now. Check with a nutritionest on what she needs. I'll bet it's at least 2000 calories per day. She should also be inputting at least two to three large glasses of water per day. Please tell her it does get better!! Recovery is measured in weeks not days. Keep up the great caregiver work you have been doing. Someone has to be her advocate.
Knowledge about this diaease is power.

Best Wishes, Danny Boy

Mark-- For as much as I almost always agree with you, I ask you to take a look at this posting again and almost all the PEG postings that are on the board. You are always in the minority when it comes to championing the no PEG position. The fact is that while patient's reactions to treatments vary wildly, and some develop acute mucocitis and swallowing issues, and others do not, loss of body weight is an indicator of something going wrong. That something is that the patient is NOT GETTING THE PROPER NUTRITION.

That someone is a tough guy and deals with the pain and discomfort of trying to get by on minimal food, or that someone's doctor didn't do the obvious, does not appeal to me as an argument that carries much weight. You, as much as any other person, have often said there is no need to go through unnecessary pain during this process. The PEG eliminates part of that pain. You have also been a proponent of getting proper nutrition in many of your posts. For most patients, especially the elderly, and those with little lean body mass to loose, going the no PEG route is not good for them. And while you lost 18% of your body weight which is significant, clearly your treating doctors felt that it was not critical. Likely your young age, physical fitness, plenty of muscle tissue, etc. etc. played a part in their decision. But as a younger, physically fit man, you might consider that your experience is not the most common one, and that your unique strengths made the no PEG decision a doable thing. But the majority of major institutions have weight loss guidelines that they will not go beyond. Once the patient's nutritional intake (easily represented by body weight fluctuations) dips too low, they doctors are going to intervene regardless of the patient's desires. Believe me I fought the idea of a PEG with them, but in the end, it no longer was my choice. I suspect that the point at which this becomes a line in the sand, (somewhere between 10 to 20%) is unique to the institution, and factors such as the persons overall health and age, and lean body mass ratios etc. all come into play. But from my own personal experience I look back (with a more knowledgeable eye) and I think, what the hell was I so resistant to? It was the best thing that I did during my treatment. Yeah, it was weird seeing that tube hanging out in front of me, but it enabled me to level off the loss of lean body mass, and provide my body (in the broadest sense from musculature to immune system) to do the best possible job of repair and recovery.

I am so glad I stayed out of this one!

Me?
I had no choice, nil by mouth for 3 weeks, water only for 3 more. So for me PEG no problems, great to stick the meds down, couldn't tolerate constant drip feed, but I did syringe feeds every 4 hours that was fine.
Just my view to add fuel to the fire...
Sunshine...love and hugs
Helen

Hi,
The GOOD news is that your mother has finished with radiation! That means while she may may feel awful and have no appetite today, she will be feeling better slowly over the following weeks and months.

Also, are the doctors and medical staff worried with her nutrition intake? They are the ones with the experience and knowledge about how patients deal with this. One possibility is that to a healthy person her intake may seem low, or may be very different from her previous levels.

A year ago, at the end of radiation, I consumed only a few cans of Ensure or Boost a day. Sometimes I would have a yogurt or a glass of soy milk. Your mom is right - food doesn't taste good and is hard to eat. But her job now is to eat and get healthy. I kept a little note book and wrote down what I ate, as well as when I took medicines. I continued to lose weight for 3 months after radiation - see why so many use feeding tubes. I had a nose tube for a few weeks after surgery. Not fun, but I fed myself. In many ways it is easier than eating.

Soft mushy foods are best. I ate a lot of whipped cream, also ice cream - although its cold for a radiated mouth and throat. I thinned down mashed potatoes with chiken broth or lots of butter. Pureed or cream soups are good. (Cook onions in butter, add a can of chiken broth and cook a frozen pack of broccoli in it. Blend it and add milk if wanted for a creamy soup).

And let her complain a bit without having to feel like you need to solve the problem. It sucks, and is no fun - a bit of self-pity at not being able to eat your favorite foods is ok!

Tell her IT WILL GET BETTER - hang in there!
michelle

If you think about it, a person that has had the PEG can really speak about it from both sides of the fence. I know what it felt like to try and eat with my throat tore up the way it was and that was very early in my radiation treatment. I also know how simple it was to keep my nutrition where it needed to be with the PEG. So, we PEG users really do offer a unique opinion as we have been on both sides.
I'm with you Helen, I could not tolerate the drip feeding. I did everything bolus with a syringe and did it as fast as I could, I was impatient with it, lol.
To PEG or Not To PEG...........that is the question. Either way all of us should be admired for what we dealt with.

Hey I vote Republican in a town that seems is entirely union Democrats I'm used to minority odds.

I don't believe I said anything nearly as biased as the comments like "PEG the only way to fly" or "see your doctor and immediatly insist on a PEG" or Your doctor must be stupid or what ever.

It seems to me that this person is already able to eat, and has a doctor that has some idea of what is going on. I don't think we need to jump all over a new poster with such comments. My posts were rather carefully worded not to bring the WRATH OF PEG down on myself and it still happened! Crap, next time I am not going to hold back.

By the way there is a 2% mortality rate directly related to the procedure of PEG tube installation.

Glenn I thought you had my back...I counted on you man.

THE WRATH OF PEG.........Mark, you crack me up. I believe you may have coined us a new phrase.

Don't take it personal Mark... you are one of the most knowledgeable, compassionate, and consistent posters on this board. And as such you have my admiration and support, you don't need Glenn. Besides, I know you. You can trade it, or stand toe to toe with the best of them. I didn't say that you took any extreme view, just that your no peg argument was frequently in the minority position, which you acknowledge. My comments were not a personal attack, just an observation. You are, it seems, a minority when it comes to the peg, but your perspective certainly offers balance to the rest of the posts. And Glenn doesn't count if he takes your side.... he truly is a real world tough guy. I don't think I'd mess with him in a dark alley....

Don't need Glenn? Nice Brian.

Mark, do the math. Minnie has about a third of the posts on this thread. All I could do was watch, remember the October exchange? In fact, everyone makes the PEG sound so cool, I'm thinking of getting one myself. I'm on solids for well over 2 years but I figure if I had a PEG I wouldn't have to worry about talking with my mouth full. Anyway, I'm about to snap on another issue here!

Glenn

Anybody hear any good jokes lately? Nice to see
some healthy debate on "To Peg or Not To Peg"
AGAIN!!!

We may all have had oral cancer but I think each case is different. Treatment is going to vary based on many factors as Brian has noted. Lets all play nice and not judge others due to their opinions and experiences. Take what you want from this open forum and leave what you don't believe.

Danny Boy

Minnie,

That was intended as a joke. I felt that there was humor in the fact that you and I got into it so bad last time. I wrongly assumed that you would remember and get a laugh. Additionally, I thought we had cleared that up. I read the October post wrong and said I was sorry. I am posting this so everyone understands the fact that I was not taking a shot at you. I have never found the need to make you feel stupid on this forum. Again, If I inadvertently offended you in any way, I am sorry.

That said, on the value of my posts. This is not an issue for this thread, nor is it a subject that warrants any further discussion. With few exceptions, I will put the value, content, responsiveness and brevity of my posts pretty high up on the scale. My humor can be dry and is frequently misunderstood by some people. Again, for that I am sorry. Do not question the value of my posts, it is a debate you will certainly lose. I have publicly responded to your public accusation that I post for entertainment value alone. If you feel the need to discuss this further please email me.

Glenn

I just can't stand not getting in on the WRATH OF PEG or NOT TO PEG!!

I believe I may be the only truly qualified person that can speak on both sides of the PEG. I had a PEG and when I used it, I usually puked up everything about as soon as I was done. It worked good for meds and fluids but ultimately I had to use TPN feedings and 3 bags of fluids a day for months to maintain hydration and nutrition. Looking with the knowledge I have, would I get a PEG or not? Absolutley I would do it again. It came in hand often and when I did use it, there were no alternatives available.

Ed

I questioned the two posts you had on this thread Glenn. They offered nothing to the person posting for help. Usually you add something to a thread, albeit sometimes your humor escapes me. Nowhere in my post can it be mistaken that I was questioning ALL of your postings. That noted, I honestly wasn't able to see that you were making a joke. It takes alot to make me mad but it's over with quick. I had barely left the computer before I regreted posting at all. It's not a big deal Glenn. For future postings...........could you send me an email warning me when you are making a joke and my sense of humor is not in tune enough to recognize it?? :p

Hello Everyone,

As you all know by my previous posts, my mom has suffered pretty badly with 3 surgeries and 6 weeks of radiation. Unfortunately, my mother NEVER had a PEG tube, feeding tube or anything for that matter. She has gone from a size 16 or 18 to a size 2. As a result, I agree with Mark, that without it, infections can result. Mark, Do you think that is what my mom has, Thrush? What is that? My mom has a constant liquid infection dripping under her chin. It has been there for months and antibiotics arent helping. So the docs are saying that her tumor is likely back. They cant do a biopsy to her jaw bone because they say they will have to break her jaw, etc. and that there is no further treatment for her anyway. So Mark, I have to say that I wish my mom had a feeding tube, My mother and family would bite my head off when I would suggest it. She is eating an egg here and there like Sarah, but it is not cutting it. It isnt enough food...I think body weight is a good indicator and I wish her doctor had looked into that. We meet with him again on Monday and I am going to bring it up. THis is ridiculous. My mom is 9 months post radiation and not any better, in fact worse, and I do blame the lack of nutrition. Sarah's daughter, hang in there and I do think a feeding tube is a good idea after watching my mom of 65 years old go through what she is going through. Get her help now.
Good luck to you and everyone. I am praying for you all
Stephany

Stephany, I am very surprised that the doctor taking care of your mother never thought of getting her a feeding tube. I think it is a general rule that if a patient loses about 10% of his weight, there is a need of a feeding tube to maintain nutrition. Even though I am happy that I went through the battle without a feeding tube, my standpoint is rather open since I am not biased against any choice. When I lost over 10 lbs, my oncologist already suggested inserting a feeding tube. I hated the idea and promised him that I would eat enough food and water. The pain was enormous but I managed to overcome it and the doctor didn't insist on placing a tube any more after my weight has stopped decreasing. Mark, you and I belong to the minority group when talking about the PEG issue. We are also the lucky ones, I think, because we managed to eat by a normal means throughout the treatment.Everyone's case is so different and I am here to share my experience rather than to convince others of what treatment is the best. I always believe that the doctors should know best and if they are not doing their job, get another one who can!

Karen

Not that I really have anything to add to this discussion other than I lost 35% (60lbs.) of my body weight (170 lbs.) and didn't have a peg. My RO was thouroughly pissed at me for refusing to get one. In 2 years I have gained about half of that back and my weight is pretty stable now.

My opinion is identical to Karen's about her standpoint. Surviving without a PEG is a tough road to hoe. Mark, Karen and I are definitely a PEGless minority here. I was fortunate that I could even make the choice. In some facilities they won't even give you the option - get a PEG or no treatment. I am sure that this is based on their experience that most H&N patients end up malnourished without it so it's just protocol.

I think we need to have a PEG debate at the next OCF reunion! Just kidding, but maybe a separate topic for it since it is always such an emotion rousing topic (for some) and that might make archive searches easier since everything in this thread has already been said several times over the past couple of years.

OK Guys
What I don't understand is the difference between a PEG in the USA and the UK, mine was a single narrow pipe with clip to be a one-way valve, about 6 inches long and unless it got it my waistband, no pain. Am I missing something here? I lost 21lb even with a peg so for me no choice I understand that for radiation it's a different issue than surgery, SO... RIGHT NEXT OCF MEETING... Badges For or against..
Everyone is different, no 2 surgeries or treatments are the same, we are supposed to be helping each other here!!!!
Ok, am off my high horse, the USA beat the British at the Boston Tea Party. LOL
If anyone takes me serious...TOUGH
Sunshine love and hugs
Helen

Gary,
Next time don't forget to include me in the happy PEGless minority. No one is suggesting anyone follow in our footsteps. Everyone is different. Every surgery is different even if it is the same surgery. Nutrition is important to fighting this battle. Do it with whatever vehicle suits your mind and body best.

Take care,
Eileen

Sorry I left you out Eileen. I like Helen's idea of the badges for the next OCF reunion ;-)

Just for the record, I was also PEGless (in fact, I don't believe the subject ever came up back then). I just knew I had certain calorie goals for each day and I was determined to prove to my radiation oncologist that I could get it down, no matter what. I ended up losing just over 10% of my starting weight -- but I was 39 and otherwise healthy up to that point, so I suspect that made a difference.

Cathy

Karen,

I am suprised as well by the fact that her doctor did not suggest a feeding tube. I have heard that feeding tubes can lead to infection, and my mom has been battling a nasty infection for several months now that is in her mouth...It is leaking fluid continuously from her chin and now inside her mouth. Her lip is huge and swollen. I feel so bad for her. I am happy to hear though that so many of you did not need feeding tubes, even with the weight loss. That gives me a little hope.
God Bless,
Stephany

Karen,

I forgot to say that we are all meeting with the doctor tomorrow to ask questions, and that will be my first question. Thanks again
God Bless,
Stephany

Stephany, your Mom and your family are in my thoughts and prayers. Love, Carol

p.s. I too am in the PEGless minority and I lost almost 40 lbs total during my treatment.

Stephanie,

I will call you soon. I know how difficult all of this has been for you and your family. I have not forgotten about you. My mom was also pegless and lost a ton of weight as we had previously discussed. Just this past weekend she told me that she is going to start dieting because now she is finally starting to gain weight. She is almost 140 pounds and doesn't ever want to be overweight again. I think 140 is a healthy weight for her but she does not want to gain anymore weight back...she has been eating everything fattening possible since the weight loss and was unable to gain a pound and now finally almost 1 year after treatment she is able to gain a few pounds.

Have you consulted other doctors regarding your mothers treatment? It seems crazy that there is no way for them to do a biopsy??

My thoughts and prayers are with you,

Dani

Hello Danielle,

Thank you for your message. I am so happy to hear that your mom is doing well. I saw our "doctor K" today and this is what happened. I posted earlier: I am so sad Danielle! You can email or call me and I can give the details. Basically, there is no hope really for my mom according to the doctor :-(

I just came back from my mom's doctor visit and he told us that my mom has less than a year to live. I am so devastated and just dont know how to deal with this. She cant eat or speak. She writes notes. THis is awful. He told us that this cancer does not spread and that she will pass on from something secondary, such as pneumonia. I just dont want to give up. He told us he cant be sure her cancer is back, but it looks that way because she has not gotten better and also because of the CT scan. Does anyone have any advice as to what I can do for my mom. She is starting pain management for her pain and nutrition in a couple of days. I just wish I could do more. I feel so awful. I am not a quitter and was wondering what I can do.
Thanks so much
Stephany

Stephany, I am so very sorry to hear this. I am praying for you and your Mom. Love, Carol

Thank you all for your support. And Sarah's Daughter, you hang in there as well. WE are all here for you.
Love
Stephany