Hi Laura,

Welcome to the OCF aand good luck tomorrow.

I am one of the few members here that did not have radiation and/or chemo. The reason for this was that I was a Stage I with 30 clear nodes from my neck and no cells in my tongue resection. It appears that my biopsy got "it" all. After spending the last 7 plus months on this website, it appears to me that the vast majority of members have had either chemo or radiation or both.

I was lucky that I found my scc so early and thankful that I am a dentist and as a result acted so quickly. Believe me when I say that before all this happened, I didn't know much about oral cancer. What I have learned is that if I had any lymph node involvement or any cells in the disection, I would have gone for the "works" and used anything and everything that was available.

A second opinion, as suggested by John, may not be a bad idea. If you are interested, please email me and I can give you the name of my surgeon at Fox Chase in Phila. It's not that far from you.

My prayers are with you.

Jerry

Its true, a second opinion from another CCC is good advice. I ended up with two differing opinions (at first) from Roswell Park and Dana Farber. Some may see risk factors where others do not--it's worth getting as much information as you can.

Nelie

IMHO.
You only get one chance.
If you are a Stage III, blast that sucker with everything you can!
In any event we wish you the best Laura.
Take Care
Marica

Laura, I went in with the opinion that I wanted to do everything possible only ONCE. I had surgery (different area) IMRT rad and chemo too. That was more than three years ago. I can spit with the best of them and am in no way compromised in any part of my life. This is such a sneaky, nasty cancer that I stronly advise that you condsider hitting it hard. Rad is not always a nightmare. I did not have a terrible time. Yes, I was burned, but you know about good drugs, and I was never flat on my back. I also recovered very quickly. If rad is recommended, do not be fearful. You can do it!

I had my appointment at Hopkins today. I had a fluid collection drained from neck. The tumor board recommended radiation given the aggressive nature of the tumor, and my age. I am fine with this, and happy to have a plan. I feel up to fighting this with everything I can. Thanks for all the advice and encouragement that IMRT is something I can get through.
Besides fattening up over Thanksgiving, any advice before starting? I know I will need a PEG, and that's OK. I think it will take the pressure off me to have to eat when I don't feel up to it.
Thanks so much - Laura G

Laura, Best wishes with your treatment. You have come this far, you will get through the rest of it! And the good folks on this board will be with you the whole way. Keep us posted!

Andrea

Laura,

Yes, good to have a plan and have the wondering over with. Will you be having the concurrent chemo too? With or without it, this is definitely something you can get through and having a PEG will help, especially since you don't have much extra weight to lose. Definitely you should try to see how many pounds you can put on before it starts (and, especially if you don't have chemo making you queasy, the first couple of weeks of rad you should be able to eat pretty normally too). Buy your favorite fattening foods and eat, eat eat.

There are other things you may want as the phlegm thickens but nothing that you can't get later in the proecss. We'll be here to offer support!

Nelie

Laura,

I'm glad you have a plan underway for treatment. You're right about trying to put on a bit of weight now (and for as long as you can even after radiation starts). You didn't mention how much of your "normal" schedule you're trying to maintain -- if you're a physician with two small children I'm sure you tend to be extremely busy. I'd suggest having a contingency plan in place for the time when the fatigue, pain, phlegm and other effects start to kick in and make it difficult to keep up with your routine. If you have family and/or friends that can be available to help with errands, don't hesitate to call on them when the time comes.

I hope you are one of the fortunate ones who gets through radiation with minimal side effects. Keep up that fighting spirit!

Cathy

Hi Laura,
Glad to hear that Hopkins has come up with a plan. I would suggest that you ask your doctors whether there is any benefit to chemoradiotherapy vs radiotherapy alone. If you do a search of the news section of the OCF site for 'chemoradiotherapy', you will find a number of articles related to Phase III clinical trials that seem to show improved results with a combination of the two modalities. See
http://www.oralcancerfoundation.org/news/story.asp?newsId=430
for example.

I'd encourage you to gain some weight before the treatments start. Based on advice from members of this board, I gained 15 lbs. before losing 40 during treatment. You should meet with an oncological nutritionist to get advice on how many calories you will require each day and which formula would best suit your needs. I found that because I was taking so many painkillers, that I needed a formula with a lot of fiber built in. You may want to supplement with benefiber or some other water-soluble fiber that you can put down the PEG.

I would also suggest that you have the PEG installed before the treatments start. I tried to do without one and ended up getting fluids via IV because I was so dehydrated and couldn't swallow. Getting the PEG in that state was particularly unpleasant. In retrospect, I wish I had it right from the beginning.

One last suggestion, make sure you see your dentist before the treatments start. Radiation is tough on the teeth and preventive dental work might save problems down the road.

Best of luck with your treatments. - Sheldon

Hello Laura,

I had IMRT and had no side effects from it at all. Sometimes I wondered if the machine was on!!! I also have a peg tube (second one) It is no big deal. It sure helps me gain weight as I have swallowing issues. You can beat this just as many of us have.

All my Best, Danny Boy