Raymond, I finished treatment in Dec.01 and three weeks after completion, I was able to eat semi-solid food-- congee. It is rice cooked in a lot of water for about an hour and to add nutrition to it, you can put meat or fish in the water. Of course I couldn't eat the meat but it was good enough to maintain my weight for a while.As regards the mucus, it would gradually disappear and one day you would discover that you don't need any more tissue paper. About your lymph node, I think the radiation is still having effect on shrinking it. Two months after treatment, I could still feel the lump on my left neck but when I had the scans, the report said it could not dectect cancerous cells and so operation was not recommended.Make sure all the necessary tests are done before further action.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Brian,
As usual, thanks for your support. I am still using the PEG about 3 times a day. My Rad. Onc. thinks that I should try to get off of it soon, but it seems that I am unable to eat very much volume so I still keep using it and then try to supplement it with food. I really don't know if I should skip more tube feedings and try to eat more at this point. I did talk to a dietician at MDACC but she was not that specific about how to do it. I seem to drink more Boost Plus and Ensure Plus rather than eat a lot. Any suggestions?
( I won't feel really back to life until I can get rid of the PEG and have the freedom to travel and eat in restaurants).
Danny G.

Hey Danny, Sounds like eating is getting better and better with each passing day! What good news! I felt exactly the same way you're feeling right now about not getting the PEG removed until I felt I could get enough nourishment without ever using the PEG as a back up. I probably kept the tube in longer than I should have, but the peace of mind knowing that I was able to subsitute if I had to was worth it to me. It's been a long haul for you in terms of food intake and I'm so glad you're finally able to not only eat, but enjoy the food too. Great news! Sincerely, Donna

Danny,

Brian is right. A couple of months from now you will look back and see how much you have progressed. We finished treatment about the same time. I started eating in Dec 2002, and tomorrow I get my PEG tube out. At first I could only eat small amounts and gradually was able to eat more (quanity and variety).

It still takes me a long time to eat a meal, but I am able to eat enough to maintain my weight. When I started eating, I monitored my weight and gradually back off the tube feedings. If I started to lose weight, I increased my tube feedings.

Tom,
Just today I ate two meals out. I feel like it was a real breakthrough and I hope to be trashing this PEG real soon. I am scheduled for my third esophagus stretching in a couple of weeks, and I may have to continue doing that, but who cares? If I can eat in restaurants...I feel like a free man who can travel, go out to dinner and have a life!

Thanks for all of your support guys.

Danny G.

Digtexas
Good for you I feel so fustrated that I cant eat only one of us would know. you went out to eat where did you go? what did you eat? do you do anything to freeze your mouth before you eat? any pain? I have to try to eat Its driving me crazy I have always had a large appitite I went from 183lbs to 135 lbs I look to skinny its depressing anyway thanks for all the support in this forum this has been a very good thread for me I look forward to all the support and answers from you all
Ray

Ray,
Hold your horses, please! Patience is required. You are still in treatment and mine finished around Sep. 6, 2003, some six months ago. It took me months before I could swallow broth, much less a meal. Having said that, now I am able to eat baked sweet potatoes, some pasta, cheesecake, chopped beef baked potatoes, thick soups, yogurts and puddings, rice krispies,etc.

However I can only eat small amounts and am still using my PEG and drinking a lot of Boost and Ensure Plus.

Hang in there Ray. You are doing fine, but for me, at least , it has been a slow process.

Danny

My husband presented with ear aches, when he went to the dr,he first was given antibiotics, and then after a few weeks, went back, then sent for cat scan, cat scan showed tumor, so on to the ent, who did mri, and then biopsy, diagnosis is squamous cell carcinoma of R tonsil, and soft palate, aprox 5 cm, lymph nodes enlarged and thougth to be involved, they think stage 4.
We have gone to three consults now, and gotten several opinions, the last being from Sloan Memorial,from the chief surgeon at the head and neck clinic, his ipinion was.. no surgery, but radiation and chemo, I was suprised, because all that we read suggests that surgery and radiation are the more common treatment, and yet this was a surgeon..We are scared, we want to make the right decision, we respect Sloan Memorial and the drs, there, but would like to hear if anyone else has been treated this way, and how it worked.
also, is it better to go to Sloan, which is about 100 miles from our home,or better to go to a local treatment facility? We want the best chance, like every one here, i am sure.
None of the drs, made metion of what to expect as far as prognosis, we do not even know how many stages there are, only that he is in the4th, any help would be appreciated.
thank you.
joansie

Joansie, hope my experience gives you some idea.I was also diagnosed with stage 4 tonsil cancer by an ENT surgeon after MRI, biopsy,etc. The treatment option I was given was concurrent radiation and chemotherapy. Surgery was only necessary if tumors remained after treatment. In my case I didn't get any operation because treatment was effective. For staging of oral cancer, you can refer to lots of information in this website. As far as I know, when the primary source of cancer is tonsil and spreads to neck lymph nodes, it is usually classified stage 4.The size of tumor may affect staging too. Do check and your doctors should be able to clarify your doubts.Don't worry, your doctors would tailor a set of treatments to the best of your husband.Many people here have similar type of cancer as your husband and they can definitely offer help.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Joansie,

So sorry to hear about your husband. This is a horrible disease, but you are taking the right steps in getting several opinions. Just don't take too long to decide what to do. Stage 4 is the worst because there are only 4 stages. If the cancer is already in the lymph nodes, time is of the essence. It can spread very rapidly through the lymph system.

You must weigh the pros and cons of all the opinions, but if the chief head and neck surgeon at Sloan-Kettering is saying no surgery, I would lean very heavily in that direction. I would also recommend going to Sloan for treatment. No matter how good your local doctors are, I feel it is much better to be treated where all the doctors are working in tandem.

If you scan back through some of my posts (just click on the number at the bottom of this post), you can read some of what my daughter has gone through and get a feel for why my opinions are the way they are. Of course, you must keep in mind everyone is different and what works for one person may not work for another.

Briefly, my daughter had stage 4 base of tongue squamous cell cancer. She had surgery and radiation. Chemo wasn't recommended, so she didn't have any. Her surgery was done 9/4/02, radiation was finished 1/3/03. She has just this week been diagnosed with a recurrence. This tumor is larger than the first one and is growing rapidly. Her only chance now is chemo and it is a very slim chance.

If we had it to do over again, she might still have had the surgery, but SHE DEFINITELY WOULD HAVE HAD CHEMO WITH THE RAD. We will never know if going that route would have prevented this recurrence, but I sure would recommend it to others, especially since a surgeon is also recommending it. The chemo supposedly will destroy any micro metastases that may have already developed. The cancer was in 4 of my daughter's lymph nodes and the chemo should have been done. The doctors had no way of knowing if any cells had gone beyond the nodes in her neck. I'm having a hard time trying to make sense of the fact that she was discouraged from having chemo.

Some people might remember that at one point, I said that it was good that Heather didn't hace chemo because she was having such a hard time with recovery. I felt having chemo would have made it even worse. However, it seems that this tumor was probably growing even while she was having RAD and the tumor actually was the cause of most of her problems. The surgeon feels it is the cause of her severe trismus and worse than normal pain. It also is the cause of the fluid pockets she has had and very possibly contributed to her problem with infections. About the only thing it probably didn't play a role in was her stomach trouble with the PEG tube. Therefore, if she had had chemo and the chemo would have killed those cells before they had a chance to form a tumor, she wouldn't have had most of these problems. Of course, this is all conjecture. We will never know for sure, but it sort of all fits together and makes sense.

Sorry, I didn't mean to rattle on. I just feel very strongly about this given my daughter's condition. If the cancer is in the lymph nodes, chemo should be in the treatment mix somewhere. Chemo alone is not the answer, but should be included in the treatment.

Rainbows & hugs,
Rosie