So here

Stoj, Welcome. You will find this site very helpful. My husband was diagnosed with tonsil cancer in December 2005 and he had 5 positive nodes, he was 42 at time of dx. I noticed that you said that you were given the choice of Erbitux or cisplatin, these can and often are used togather. My husband got both. Our oncologist says that the Erbitux has few side effects, acne is the most common. Take care and good luck to you.I found so much useful info on this site and when we would go back for the weekly visit with the oncologist he would ask for my list of orders I wanted him to write, and he would comply.Be proactive, most physicians will be fine with it.

Hello, Stoj. I am very glad that you found this site. There is a wealth of information at the main site, and on this forum, there is always someone who can answer any question you have. Be prepared to get suggestions and information in great quantity, as we who have walked that road are anxious to help in any way that we can.

I applaud you for taking charge of your treatment. I understand the kitchen sink philosophy as I felt exactly the same way almost five years ago.

That you have stopped smoking is smart, as to continue to do so seriously compromises the effectiveness of the radiation. That you have influenced others to do the same is just wonderful.

Pay attention to any changes in your hearing. A very small percentage of people who take cisplatain can end up deaf as a post, which I don't think is a good trade off. I am thus far the only one I know who had this problem and switched chemo drugs, but I feel better when people are aware. My hearing is just fine now.

As you get into the gritty part of rad, remember that is not only your RIGHT not to be in pain, but you will heal much faster without having to deal with it. Having said this, you have the encouragement of everyone on this forum to speak up at the first sign of discomfort and ask for help and keep asking until it is provided. It is much easier to take care of pain at the outset, than later on.

I am glad to hear that you have a PEG. As your mouth gets more sore and swallowing becomes very painful, it will be a lifesaver that will allow you to have the nutrition you will so badly need, will keep you from dehydrating, which is a real risk and something you do not want to deal with, and it is also one slick way to get meds in PDQ. Ask for the liquid form of drugs you are given.

Again, welcome. As you can see, I wasn't kidding about you receiving all kinds of input from us. Ask any questions at all, and if your wife wishes to come here for information, there are many caregivers on the forum who understand much better than we patients what issues she faces with this disease.

Joanna

Hi Stoj, Glad to hear your in Texas, I live in Houston and i too, have SCC and had my cervical lymphnode removed. I am going through radiation right now, i have completed my 15th day, So if i can help in anyway, please let me know. As far as the sore in your mouth, try going to a health food store and getting "DGL" (deglycyrrhizinated licorice root) I crush them (tablet) and add just a little bit of water, (make a paste) then i put them on my sores and they are gone within 1 to 2 days! Put the paste on the sores at least 3 to 4 times a day. If you like Licorice then it wont taste bad, but if you dont, well it gets rid of them and fast! Hope that helps you. Anything else you need just let me know. Have a great day, and god bless.

hi stjo, welcome.. i was just diagonsed with SCC on 8/4/2006 and believe or not i'm not a smoker or drinker and i have excellent oral hygine. so how i got this only God knows. I just got my PEG in on thursday and boy i feel the pain. i walk like i just have 20 kids but in the long run i'll be able to at least try to keep up with my 4 yr old the pain is worth it... good luck and god bless you.. i read this little saying and i want to share it with you... "IF GOD BRINGS YOU TO IT, HE WILL GET YOU THROUGH IT" I live on this promise daily...

Welcome Stoj,

Your first post was great. You gave us a wealth of information and you will see that the helpful suggestions have just begun. It's great that you have stopped smoking and that you are spreading the word to your friends and family.

You have shown that you have a great deal of knowledge about this terrible disease and that you are actively involved in your treatment plan. That's great! Try to get your wife involved, as Joanna suggested.

I am confused about your staging. Sounds like it should be T3N1M0 or you are Stage I, not III. Probably just a typo.

By the way I am a retired USAF Captain, having served two years as a dentist at Vandenberg Air Force Base in California from 1970-72. As you well know, you are are in good hands and the fact that your family has been able to join you, says a great deal about the air force. Hope the rest of your treatment goes well and that you make a speedy recovery.

Jerry

Jerry,

I think the reason for stage III is as follows:

The cancer is any size and has spread to only one lymph node on the same side of the neck as the cancer. The lymph node that contains cancer is 3 centimeters (just over one inch) or smaller.

I spoke to my RO today and he said depending on who staged it it would be III or IVA. The positive node was over 3cm but the carcinoma part wasn't the majority of it was cyst. In the overall scheme of things I'm not sure it matters because the treatment would be the same according to the Dr.

Anyways I'm done with my 11th RT, only 22 to go. I always feel a little better when I can put another X on the calendar. I agree that the AF is doing a great job both medically and support wise for both me and my family.

Stoj

Stoj,

I think Jerry might have misread your post(?). Maybe he thought the tumor on your tongue was 3cm? I was also a stage III with a T1(1.2cm)N1 (.4mm) MO.

Good luck with all of the treatments. They aren't fun, but you will get through it in one piece. I had my 4 week follow-up today and I can tell you that every day is better than the last.

Good luck and please e-mail me if you have any questions!

Sarah

Thanks Sarah,

I do have a question are you able to eat yet? How were the mouth sores? Did you have anything special you did to deal with them?

Tim Stoj

Marie, without wishing to offend you, there is a reason that in the agreement to use the boards, we have rules regarding discussion of religion. The rule is basic - if the original poster did not reference God, Buddha, Mohamed or use any other reference to religion, such as your prayers for me would be appreciated, the following posters are obligated to stay away from religious references. You haven't said anything offensive here, but the rules also exist because the original poster's feelings related to a supreme being, if any, may not coincide with the particular one that you reference. We have atheists, Jews, Buddists, Hindus, etc. etc., and others represented here on the forum.

Lastly, several posters here have in the past made similar statements related to "God" not giving you anything that he will not also give you the strength, means, etc. to deal with mentally or physically. Unfortunately we have had too many people who post on these boards die from this disease, friends to us all. I think that in their cases any God referenced clearly gave them more than they could handle. It's a nice sounding platitude that does not always apply. I am glad that you find strength in it, but perhaps the comment is not for everyone.

Please do not be offended by all this, I wanted you to hear it from me, before you got it from someone else, hopefully in a manner which does not offend you, but aids you in understanding why these points are made in the sign in agreement. We all know that you only had good intentions in your heart.

Just stopped by to say hi today. I finished my 12th RT. For the record I'm not offended by God talk. In fact faith is a big part of my life and always has been. But I also realize it can be a hot button issue, so I will heed the Mr Hill's advice.

Another X on the calendar 12 down and 21 to go. The side effects are kicking in slowly but I have my pain meds lined up ready to go when needed.

Thanks
Tim Stoj

Tim,

As for your question, I actually never really got mouth sores. My mouth had rough areas where it was sensitive to touch, but no actual sores ever formed. That is probably why I just got by with the Roxicet. I have been able to actually eat by mouth since my treatment ended almost, but I am still using my PEG because everything still tastes REALLY bad. I try something everyday as a gauge, but nothing really tastes like food yet-more like metallic garlic or something else horrible.

Congrats on having another X on the calendar!
Sarah

Sarah,

Thanks for the answer. You were blessed not to have the mouth sores. I can't taste anything either, but I'm still eating by mouth. I have to force myself though and it's a struggle. I hope your taste comes back soon.

Tim Stoj

Thank you for the understanding Tim, and there are no issues with it at all if the first poster mentions it. But you are right it has been the hot button for too many heated debates here, for which there is no right or wrong. By the way, Mr. Hill was my father...everyone calls me Brian.