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.