Hi everyone. Im new here but have enjoyed reading all the posts thus far.

I need some advice. My husband has 4 more radiations left. He did not get a peg placed and has been able to maintain some nutritional intake through this process up until now. Now, his mouth is an absolute mess and it takes all he has a lot of times just to swallow the morphine. We both know that just because RT ends in 4 days, that we have a long road ahead of us still.

At this point and time, he considers having a peg placed as admission to defeat. But, he has quit taking any type of nutrition by mouth, It is going on 8 or 9 days now. What do I do as a spouse? If I bring it up at all right now, I get my hid bitten off and frankly, im too tired myself to go toe to toe. He is also talking about not going back for his last 4 radiations. Please give me some advice
Thanks

Hi Tracy
well now is the time for all good caregivers to get tough girl.......If you dont fancy going head on with him then its stealth tactics and go behind his back.if you can get him to his next tx then while he is having his treatment find someone you can speak to and tell them in no uncertain terms that he hasnt eaten for 10 days.Failing that ring his doctor or a nurse and tell them.He will never recover well from RT in such a debilitated state,nutrition and hydration are the keys to success.

He may well rant and rave,he may spit the dummy big time,but what the hell you really have no choice,and its better a few tears now than a lot more later.
good luck
liz

Tracy,

Consider a J tube. It goes thru the nose in a minute and after an x ray to make sure it's in the proper spot, they pull the wire out of the tube and he's set to "inject" all the water and "food" and meds he wants. No surgery, hardly any discomfort and if any, it's momentary. It can be pulled out when he's out of that tunnel in appx 3 weeks.

I closed the other post so that the responses stay together.

Traci, There are a few of us here that were able to get through without PEG. I recall very well the last week and it was hell. If he is being watched and kept hydrated I would imagine he can finish. I would think that if his medical care givers were worried they could supplement some nutrition with his hydration. I ended at the weight I was at high school graduation (thin but normal) after loosing 30-35 pounds. Recovery from the oral pain can be fairly speedy. I felt better even after one week (I was able to swallow throughout the treatments).

Mark surely what traci is saying is that he hasn't taken ANY nutrition by mouth for 8-9 days,thats serious by any ones standards.

I would be very surprised if his medical staff is fully aware that he hasn't taken any nutrition for over a week and are doing nothing about it. My recollection of those who got through treatment without a peg tube was that there were only a few days when they took NO nutrition. At the rate he's going, it will likely be 9 days already, plus 4 more days to finish treatment, plus at least 7 more days post-treatment when he is as sore, or sorer, than he is now. That's 3 weeks without nutrition which is very dangerous. I agree with Cookey. His medical team needs to know the extent of this.

My thoughts are with you -Sophie

Traci

I know its hard right now. Please let your husbands doctors know about him not having any nutrition for days. This will make the whole process so much more difficult on his body. Without proper nutrition he will not be able to heal. Its not just losing weight, its being able to get energy from a balanced diet. Im sure he must feel terrible and with no nutrition going in, it only makes him feel worse. This is coming from experience and I had a PEG tube. I still was admitted to the hospital for malnutrition and dehydration. Tell the doctors right away! At the end, I was ready to quit too, but he cant. he went this far to give up now. The nurses can help you with this if you tell them how things are.

As far as a fight goes, Im sure you are exhausted from the whole process but dont back down. Your husband will not be able to heal properly if he doesnt turn around immediately and help himself. Dont let something like fear of an argument make you back down. Ask the doc for something called 'magic mouthwash", it will numb his mouth. Try giving him Carnation instant breakfast or even yoo-hoo just something to give him vitamins. I drank alot of yoo-hoo since its so thin, it was easier, but I had the liquid feeding solution for my PEG tube to depend on.

Best of luck with this difficult situation.

Mark.... you know I just love it when people equate body weight with heath or nutrition. Completely negating any science at all. Losing 45 pounds of what will mostly be lean body mass is not heathy, retards healing, and compromises everything from mental clarity, to strength, and immune response. You guys that think you were so tough, had an element of stupid mixed in with that tough. Sorry for the tough LOVE, to my good friend, but geeze I am tired of this lack of understanding. Cancer treatments are NOT A DIET PRORAM FOR THOSE THAT WERE OVER WIEGHT WHEN THEY STARTED THE PROCESS.

Brian,

Thanks for saying what I was thinking. Losing 35-45 pounds in a couple of months is nothing like being the weight of a high schooler. I imagine that getting through treatment without a peg tube is in part a way of having some control over a terrible process which I can completely understand. But, paradoxically, you may be gaining control in one way just to lose the control which is most important which is to control for the hydration and nutrition needed to maintain overall health.

Sophie

The medical and radiation oncologist are aware that he has not taken in any nutrition. From the start, the doctors have urged my husband to get the peg but ultimately it is HIS decision. They said they would allow him to lose up to 10% of his body weight before refusing to treat him further. That would have been close to 28 lbs which he has surpassed. They made an appointment fo rhim last week to get it placed which he did not keep. For the doctors to say they will not continue to treat is basically music to his ears. Solves his dilemma of not returning for the last 4.

David; thank you for your suggestion. I plan on pursuing it further with the doctor on tomorrow. (BTW its a NG tube - not a J tube)

Thanks everyone for the suggestions. I read them all to my husband.

Interesting side note to all of this is that he is 1 of 3 family members that have been diagnosed with base of tongue cancer since August 2008. None related by blood.

Traci - There's been nagging, fighting, tears, etc. here for a couple of months. My view is get it done - the treatment - no matter what it takes, meaning toe to toe or behind his back. My husband, who is sitting here with me would say I'm a nag (and also admits that's pretty much what it took). We fought over the PEG and we fought over the RT. But he's thru with chemo and RT - probably will still need surgery but at this point the docs can't see the tumor at BOT any more. His weight went down 25# and is now coming up slowly. Good luck to you both.

Hi, Traci,

I think you've added more information about your husband's diagnosis and treatment since your first posting. It looks like he had induction chemo (taxotere, cisplatin, and 5Fu) before he even began the combo radition/chemo. I'm amazed that he got through that and then this far without a feeding tube. My husband had that as well and by the time he got to the combo RT with chemo (which is the point at which most are just starting treatment) he already had mouth sores, had lost a lot of weight and was somewhat depleted. That's a lot of months of treatment and I imagine you're both exhausted. My husband and I were both barely able to get to the treatments by the end. I hope you get through the next week- you're so close to being finished and I'm sure you both want to think that you did everything you could to beat this. I wish that Lew could reframe how he views having a feeding tube and view it as a way to actually control one's hydration, nutrition, and pain meds. I think it would be pretty unusual for someone to go through induction chemo (for 6-7 weeks) and then through 7 more weeks of radiation/chemo and NOT have a feeding tube. My recollection of the folks on this board that made it through without a feeding tube is that they had 7 weeks of chemo/rad without induction chemo.

That's unbelievable (in a terrible way) that three family members have had oral cancer in the past year. My thoughts are with you and I hope you'll let us know when you get through the final week of treatment.

Sophie

Hi,
I was very lucky to have a husband that did everything I said to do. How rare is that! Traci, if you can get him through the next 4 treatments then he will be done for now and can start to heal. Maybe he should see some pictures or hear the stories of dying H&N cancer patients to shake him up a bit. Being stubborn is an excellent trait, but it sounds like it's gone too far. Hopefully the docs will be able to help out. You are not a miracle worker, so just do the best you can to push him over the finish line.

Cheryl,
Why will your husband need neck dissection after the treatment? I'm asking because on April 15th we see the H&N surgeon for our follow-up and Richard's one lymph node can still be felt. It's very small and we don't know if it's scar tissue residual or what. It's hard to imagine cancer living through this treatment, but it still makes us both very nervous. I wonder how common it is to have the nodes removed after treatment and find them negative for cancer. The primary tumor was super small , under 1cm. with only the one node involved. Oh well, I'm sure we will get some answers on the 15th. Geri

To Sophie:
Not everyone has the same experience with Induction Therapy. I did 3 cycles of Cisplain, Texatere, and 5-fu,and found the side effects more annoying than painful. However, I don't think I could handle the same regimen AND radiation at the same time. Since the cycles are 3 weeks, I've added a 4th recuperation week before starting carobolatan and tomotherapy.

The reason I bring this up is that I believe that induction therapy will become more prominant in the future. There have been some large recent studies (EXTREME study?) that show a significant survival time with the above induction therapy. However, it is not ususally used until lymph node involvement.

It is a long involved cancer treatment, but you do what you got to do!!!! If anyone wants to know more, please email mor.
[email protected]

Tracy:
Tell you husband, he's a wuss!!!. I'm a female, 150 lbs., 5ft. 3 in., out of shape 55 years old, and I AM DOING THE SAME TREATMENT. Everyone handles it differently, but the doctors should be able to handle any pain.

My radiation doctor requested that I put in the feeding tube during our first visit. It's not defeatist! Doctor's are aware of both the mental and physical problems, and know that keeping your body function nutritionally well, will help with the treatment process and healing.

The most difficult thing for a patient is to keep a positive attitude. I've stopped reading a lot of negative cancer stories and articles. The statistics given, are only statistics. My case is individual, and I'll continue to work to make it exceptional!!!!! That should be your husband's attitude. If not, have him write me. Attitude makes all the difference.

I'm sorry if I seem so angry, but I just had a cousin die from lung cancer who could have lived happier and longer, but chose to give up...I just can't make that choice!!!

Traci

Read one more post to Lew

Lew:
Nobody understands just how important NOT getting a PEG is to you, even now. Except perhaps me. I had Stage IV BOT also that spread to left lymph nodes. I kept eating solid foods longer than anyone my team had ever seen after starting the 40 RT. You and I both know it's not being "TOUGH" like everybody assumes. It's symbolic of being strong enough to handle this cancer on our terms not its nor the doctors. We can't change the damn radiation and its effects. We can't do a thing about the Chemo side effects except take it. What you and I could do and did do was REFUSE to take a PEG. Trust me brother, nobody felt more strongly than I that Feeding tubes are for invalids and those too weak to show this cancer what's what. Plus what if I forgot how to swallow? And what did I get: Bragging rights big time and a year of thinking I was RIGHT about no PEG And I was wrong.
Well guess what Cinderella, Midnight has come and gone and you are sitting with your head up your pumpkin pretending you are winning. At least I was really tough, no candy ass port for me: just both arms with blown veins and huge black and blue marks. I NEVER missed one day of pushing Ensure Plus down - even though it took a half an hour over the sink. One sip of Ensure Plus, then swish with Selzter water to spit out the mucous, one sip of EP etc etc. You have dropped the ball, buddy, admit it and wake up. Listen, if I was there, I'd pick you up by the throat and shake your sorry ass and say THINK OF TRACI if not yourself. I may not be as good as I once was, but I'm as good once as I ever was. Time to be a man my friend. Get in touch with your inner Chuck Norris, I can already tell you have one by the way you are handling this. No shame in doing your best and then doing what a man has got to do- be really tough and get the PEG
Yeah, you are close to making it without a PEG, but this is not horseshoes and almost does not count. At a minimum get the nasal tube- but the best thing is do go the PEG route now. I hated the nasal tube and it choked me and was terrible, I was glad to get the peg. I don't know what shape your throat is in, so you may have to do the PEG the hard way like I did with floursocope and percutaneous instead of easy poke a hole in over the light.
Do you want to be sitting here a year from now and if the cancer comes back think, If I had only finished those last 4 RT I may have beaten it. Do you do any road races or running. I was always amazed at those who dropped out of the 10K at the 5 mile mark. I understood those who dropped out of the marathons I ran at the 22 mile mark. I never quit nor dropped out and always puked in the finishing chute as I pushed myself to finish strong. You are quitting just when you can cross the finish line.
Listen, I kept my cool the entire two years until I failed the barium swallow test last month and had to get a PEG. I broke down and sobbed uncontrolablly for the first time since DX because to me getting a PEG meant the end of everything. As I said at the beginning of this post: perhaps nobody but me can truly understand just how important for so many reasons not getting the damn PEG is for you. went from 177 down to 128 and cheated on weigh ins by putting lead fishing weights in my vest pocket plus blackberry and cell phone all cleverly hidden to avoid the doctors not treating me anymore But you are not eating dude. the next month after Radiation is over is brutal and worse than when you had treatment. Without nourishment, this cancer is going to beat you, Just my opinion, but it breaks my heart to read threads like this one You know only 5 out of about 6000 posters here got thru without PEG (with Stage IV) I have been where you are brother and it's time to move on. My wife cannot believe how easy it is to hook up the feeding bag and let the liquid pour in. Get yourself a 14 FR PEG not a lousy 10 or 12. If you can swing it, get a 20. Size may not matter in urology but it sure matters in oncology: the bigger the PEG the better.
Turn this thing around before you regret it. I got a second chance, you may not. Mets to the lung can come pretty fast when you don't finish RT, Is it worth it my friend. We both know the answer. Do the right thing, get that PEG

Eloquently put as ever charm but im my humble opinion needed saying.

Traci,

Sorry it's tax season and I tend to rush thru my posts these days. Anyway it's an easy thing to put in and easy to use and is meant for temporary fixes so it seems perfect.

Geri - Neck dissection as the lymph node on the left did not shrink as much as they wanted it to - still fairly prominent. The right side did shrink down so not sure what will happen there. CT scan is now scheduled prior to our meeting with the RO on the 14th. I am sooooo jealous that your husband has done everything you asked! You are one lucky caregiver. The last couple months for us has been "bad patient" vs. "nagging nurse" - lol!

Lew - Listen to Charm.

Traci,
I had an NG tube for 8 days after my trach surgery. If MUST complete is RD treatment and the NG tube is an easy way for him to get nutrition for a short period of time. He MUST have nutrition to heal.

Take care,
Eileen

Traci

Hows your husband? Did you have a chance to talk to his doctors about the lack of nurishment?

Sorry it took so long to post back but it has been a full week of ups and downs. We went to see the radiation onc before his scheduled treatment on Monday and he decided to postpone his last 4 treatments for a week. That was a great relief and a pick up to his spirits. So much so that he ate a bowl of ice cream and drank an ensure Monday night. Tuesday came and he was feeling pretty worn out but optimistic. That night he started running a temp and at 4 am Wed morning, it was up to 103.2. I called the doctor on call and was told to take 2 aspirin and call in the morning. We visited the med onc on Wed and Lew had GAINED 2 lbs but was still feverish. We were sent over to the cancer center so he could receive his daily fluids and had 3 antibiotics administered as well as blood cultures drawn. When we left the hospital Wed., he had no fever. The fever returns each night and edges up as the night goes on. Then after he receives his antibiotics (3 days worth so far) it recedes. Right now its a little over 102. And of course, he has quit eating again because the ulcers in his mouth seem to get worse daily. Can somebody please tell me what the yellowish stuff that seems to just ooze from the corners of his mouth is??? He has also developed radiation burns starting under his nose and continues to his chest. Weeping oozing sloughing of the skin type burns. He doesnt sleep at night because he becomes so swollen and takes 2 or 3 hours to get cleaned up enough to go out in public for his treatments. The only sleep he is getting is while he is at the hospital getting his fluids. Everything I say or do is wrong and is nit picked to death so I invited 2 of his buddies over tonight and await their arrival. Hopefully hearing from someone else will help.

Sophie, to answer your question....yes he did receive 2 cycles of taxotere, cisplatin, and 5fu that dripped for 4 days. Then he started weekly chemos of Erbitux, Taxol, and Carboplatin along with radiation.

Thank you everyone for your posts. You can view pics of Lew from diagnosis to his current condition on his webpage http://asilentepidemic.webs.com/apps/photos/

Hi Traci.

Hope today is a better day. Right now is the hardest time of treatments. It still be rough for about 2 or 3 weeks after treatments are finished. Then your husband will start to feel a little better day by day.

The yellow stuff could be from the infection. Has the doctor given you anything to put on the radiation burns? I used beta-val cream which worked wonders as there are no scars at all.

Try your bet to think positive, no matter how difficult it gets. You know you arent the bad guy here, you are trying your best to take care of your husband. Looking out for his best interests isnt easy. When he is feeling so lousy, he doesnt mean to take it out on you. This will be over soon and things will be better. Being a caregiver can be an awful, thankless job. We are here for you too, hang in there.

Traci, please listen to Christine. I was a mean one so I been told but I sure didn't know it.It cost me a relationship so I am told and have appologized many times for what ,I have no idea.But like all of us, it affects our minds then runs when we feel better. LOL Oh my this OVC is so great and causes so many damn problems for us that suffer. Just don't blame hubby for something he can't control.

I coughed something up last nite before bedtime. Thick , a pale yellow and had a terrible odor to it. Just to finally cough something up and out was a good feeling, but I sure would like to know what could smell so bad.

Hi Jim- I don't know- it was probably something that was stuck down there forawhile. Good luck with all of your appt this week. We will be praying for the best possible outcome. K