Bill, the flem stuff is horrible for any of us. I couldn't say mine was worse or better than someone who had the other treatment. Boy it was terrible for me. My rapid weight loss even with the PEG was probably due to the ropey flem, as it made me throw up quite a bit.

Even now, four and a half months post treatment, I occasionally have to hack up some flem during the middle of the night, but it's still a great way down the road from what I use to put up with. I'm even grateful that I no longer have to sleep in a recliner and can sleep in my own bed.

All I can say, such a few short months after treatment is that I am amazed that I feel as well as I do. There were times my radiation onco would tell me about another patient going through the same stuff that never even had a dimished appetite. I couldn't believe another woman could still mow down cheeseburgers and fries, when I had to concentrate on just keeping my PEG feeding down. However, it did remind me that everybody responds different to treatment. After finding this forum, I realized that I, like most, had the problems usually associated with radiation and chemo.

Treatment is no picnic. Even when it's over it takes awhile to recoop and heal, but just a few months out from it, I really feel better than I thought I would, which is remarkable. I just hope there are continued improvements.

Jen

Bill,

One more thing I forgot to mention in case you end up looking for 2nd opinions. In addition to St. Joseph's Cancer Center in Tampa, Anderson MD Cancer Center(US News #1) just happens to have a branch in Orlando. I called over there at one point when we thought Jerry wasn't going to be able to get IMRT at Moffitt and set up an appointment. When Moffitt finally came through, I cancelled. Anderson MD - Orlando staff were extremely helpful over the phone. They actually let me speak to one of their doctors without an office visit.

Also, I find it interesting that the Moffitt R.O. told you that "he had not seen much, if any, difference in the after/side effects of the two". We were told they almost never use IMRT for patients who also had surgery, so my husband must have been one of the few they have observed. Throughout his treatment the RO and his nurse told my husband how he was doing so much better than the average patient. I can't say it was due to the IMRT. I just know that those were the comments made at the time.

Eventually I guess I'll remember to list everything to avoid confusion, though that seems to be my state these days.

I only went to Moffett for a second opinion on surgery as my ENT pretty much put the fear of God in me regarding having it done. I must say that he gave me the impression that he was scared to death to put a knife to me as he constantly was makeing reference to the nerve bundles in the area. Though I did not ask, my guess is that he likely has never removed one of these.

Also, I suppose it is okay to mention other reasons for my lack of trust as I will not mention his name. My GP referred me to him back in 2002 for neck, shoulder and ear pain. The diagnosis was something to do with my hyoid bone and in time the symptoms went away. They returned a couple more times and were also attributed to the same problem. Each and ever transcription report of my visits make mention of leukoplakia. The report from my August 2004 visit says, "The base of the tongue is swollen." Other than some xrays back in 2002 and scoping my throat on several visits nothing else was ever done. I have not seen him since the post biopsy visit, and have no intention of returning there.

At Moffett, I only met with an ENT doctor, who spent quite a bit of time with me, going over my MRI and the office visit dictation. Needless to say, she was quite appalled that no investigation had been done. Given the size of my tumor and the fact that it had not spread anywhere, according to the MRI report, she highly suggested only radiation and chemo, saving surgery "if" is should ever return.

It is the RO that I am seeing here that made the comments regarding IMRT, not anyone from Moffett. He did tell me that he would do whichever I chose though. If I have left anything else out please ask.

That sounds pretty typical Bill. I had a raspy voice and occasional ear aches and sore throat off and on for over a year. My doctor actually sent me to a Pulmonary doctor, when I was so short of breath I could barely get around,who scoped my lungs and "on the way out" saw that my throat was almost totally closed.

My Onco/Rad said he gives IMRT for some types of cancer but for mine it is XRT. They did explain to me however that the machine they use has "sleeves" in it that conforms to the shape of the area being radiated. Some may know what its called but I can't remember. I had surgery first and then 33 rads.

Hopefully the one you go for will be the winning one. That is all we can hope for.

Blessings,
Barb~

c clark-
My Mom lives in austin tx- 3 hours away from MD Anderson. I urged her to get a 2nd opinion before doing anything but she was anxious to "beat the cancer" so she proceeded with a local oncology group. Do you know if I would be able to talk with someone at MD to see if her course of action is similar to what they would do? I live in NY. How do you get a phone consult?
Tami
Mom has base on the tongue cancer stage 3.

Bill, I would definitely go to Moffitt or one of the other cancer centers mentioned in the area if you feel your ENT doesn't have experience. The surgeon we saw at Moffitt is very skilled and has done hundreds of these procedures. We both had a lot of confidence in her skills and she seems to have done a thorough job. She got all of Jerry's cancer and clean margins. He ended up with 4 cancerous lymph nodes and they had intertwined with a muscle and nerve so she did end up doing a modified neck dissection and did have to cut some nerve endings. This has been one of the things hardest for him to heal from and he will probably eventually go for massage therapy because we're assuming he has lymphedema (swelling, pain, etc.). We were very thankful that the Moffit surgeon was able to remove all the cancer in the oral cavity and the neck. Frankly, I hate to think what would have happened had Jerry had the surgery done from the original ENT he saw. He was treating it like an outpatient operation to be done in an afternoon. He wasn't going to remove the lymph nodes and he didn't warn him of some of the problems that could arise from the BOT surgery. At Moffitt, they took care of it all and he was in the hospital for 4 days. Definitely take care on your choice of surgeon.

Tami, I found the number for New Patients for the Anderson MD Orlando facility and called and explained the situation. When I called, I was inquiring about getting an appointment for a second opinion and actually scheduled an appointment. I told the person that I had some questions about the use of IMRT and asked whether they used it and under what conditions, etc. She arranged for a doctor to call me back and we chatted for several minutes about Anderson's use of IMRT. That was the only experience I've had.

Again, I am not having surgery. The wonderful folks over at Moffett did not feel it was necessary and were very confident that the rad and chemo would take care of the problem without any problems at all. Had they suggest surgery it most definitely would have been done there.

My local hospital, which has a cancer center as a part of it, is an affiliate of Moffett and both my RO and MO are affiliates also. The docs at Moffett, knowing my docs, told me that my docs would give me the same level or treatment that I would receive if I were to have it done there and had much confidence in them, as do I.

Bill, My apologies for that last post. I forgot that you had said there was no need for surgery. Good to hear also that your R.O. is saying he will treat you with IMRT if you prefer. It's good that you don't have the lymph node involvement because I think the majority of my husband's post treatment issues have to do with the modified neck dissection. You should be in good shape if they can do a good job sparing the salivary glands. Best of luck to you.

Dad is starting 4th week of IMRT-his mouth one uninterrupted sore-but, his tumor is "significantly" and "profoundly" (MD's words). The cumulative effects of the rad came over night. One day we were eating pizza, the next he was shaking with pain. This is our experience-there is no way to prepare. BUT even NOW, my dad says that this is path to killing the little mother F-er in his throat. Having sharing that, the IMRT is the way to GO!!!
Ensure you are stocked with your pain meds BEFORE it starts. He doesn't have the PEG tube yet but he is down to ONLY LIQUID nourishment.
Best of luck-we are all with you.