Hello to everyone. Thank you to those who responded to my introduction post.(I have tongue CA). Thank you for encouraging me to do the radiation and chemo. We got about 4 different opinions and no doctor could really give us a firm opinion either way about doing radiation. So ultimately it was up to me to do it. This website helped me to be realistic about what it is going to be like, as well as give me encouragement to go through with it. All I have to do is look at my little kids, and I know I needed to do the radiation.
So I had my first treatments last week. The Cisplatin has not been too bad. I got one dose of Amiphostine and had a violent vomitting reaction about 45 minutes after the subQ injection. Thank goodness I wasn't still in the mask! I had to be hospitalized, but once it wore off I have felt better. So no more Amiphostine.
The radiation is going OK. I am getting more used to the syringe in my mouth, that is the worst part. I've only had 3 treatments and I already have a sunburn on my skin and some pain in my tongue. I thought I would have 2 weeks or so with no effects. Guess not. And food tastes terrible. Not sure if that is radiation or chemo. Eating is a struggle. I already have a PEG, but I still feel sick even putting Boost through it.
I know it's going to be a long road, and I am just trying to do one day at a time. It's hard when you know you are going to feel much worse than you already do. But I'm trying to keep my chin up! And thanks again to all of you who have been through this and take the time to write to people who are going through it now. I spend a lot of time reading people's posts and I feel it is more informative than going to the doctor!
-Laura

Laura,

I'm sorry to hear you're already feeling some of the side effects of your treatment. However, given your relatively young age, I agree with your decision to attack this disease aggressively.

Feel free to check back here whenever you need support or suggestions -- you'll find you have plenty of company.

Cathy

Laura,

I also think that given your age, and that you have children who are going to want you around for many years to come, you really did the right thing too. I've found my choice to be aggressive has also given me some peace of mind when I start worrying about a recurrence. I know I have done everything that could be done to prevent one and it's a lot easier to not obsess about it because of that.

It does seem like it's early for some of the side effects but everyone is different. I had a muc harder time with the first dose of cisplatin although I didn't get mouth pain or a burn as quickly as you did.

FWIW, if I had to do it over again (thank God I don't!), the two things I'd do differently during radiation are I would have gotten and been using a therabite, to keep my jaw from tightening, during radiation (instead of 3 months after), and I would have worked on swallowing and swallowing exercises more all the way through. I did keep swallowing water (which tasted awful) but apparently not enough of it and wasn't really using those swallowing muscles enough.....

I also found it very hard at the beginning when I was feeling bad but knew I would be feeling much worse in days to come. Just take oe day at a time and they will pass--and we'll be here to offer commiseration and support when you need it.

Nelie

Hi Laura, Your attitude is good, keep it up! For me, going through radiation was like pulling a heavy load (like oxen would do). Never fast but slow consistant pulling. It becomes a mind game but you can do it. Hopefully your early side effects will not progress and will remain tolerable.

Laura,

It does get better. It may not seem like it now, but IT DOES GET BETTER. When I was going through it, I would often think about my kids and my wife. I have a lot of living to do. I never regretted going the most agressive route. Keep your attitude posistive. It definetely helps not only you, but those loved ones around you as well. We're all pulling for you.

John

Laura, I had rad and chemo too, and I just blocked out that time from my real life. I decided before I began, that I could handle absolutely anything that was necessary for that period of time. Strangely, because I was prepared for something unimaginably awful, it never got to that point. Never forget that you will get past this time, Laura. It is short period of your life. Mark every day off on a calendar so you can see what you have accomplished and how much closer to the end of treatment you are. You will find that you are tougher than you thought, and you can be very proud of yourself when you look back. Everyone here is pulling for you.

I should add also that Joanna and I both had IMRT and didn't need amofostine. We have both recovered substantial salivary function.

Hang in there - it WILL pass!

What Gary means is that we can spit with the best of 'em! You can join our club in about a year.

Laura,

I was 41 when I was diagnosed and went through the aggresive treatment of radiation and chemo followed by radical neck dissection. Like everyone else has said - day by day - you'll get through it, just keep your thoughts on being here to raise your kids. That's what I did - I wanted to do everything possible so that I would be here to see them finish growing up. It's amazing what we can pull ourselves through. It's been almost 2 years since my diagnosis and I feel great. Yes, I have a somewhat dry mouth but I just carry a water bottle, no big deal. Like Nelie said, if I had anything to do differently, it would be to force myself to swallow more during treatment. I deal with swallowing issues now, but have seen improvements - I eat most foods, just have to be careful and go slowly. My thoughts are with you as you go through this journey.

Pam

Laura,
There is a reason that they call us "patients". Always having been an impatient person, I learned real patience while going through and recovering from my treatments. The way that I look at it, we really have no choice but to grin and bear it. I spent lots of time in waiting rooms at MD Anderson and my recovery took much more time than I thought it would based on the doctors' projections.

The hardest part for me was when I felt bad near the end of the radiation treatments and in the period shortly after those treatments ended. What made it so hard was that feeling bad was very discouraging because, at the time, I could not envision ever getting back to living a good life.

Well, as it turned out, I did recover and life is every bit as good as it was before the cancer. Sure I have to carry a bottle of water everywhere I go, my dry mouth wakes me up at night and eating on the run is a little difficult. But other than those minor things I can do anything that I want and I feel fine. I even married a wonderful woman post cancer and am about to experience my second daughter going off to college in the fall, when, at one time, I did not know if I would make it to my first daughter's high school graduation.

You sound like you are doing really well, and, you are lucky to be getting IMRT, an option that I was never given. Keep up the good work and keep the faith. I hope that you have better luck with your feeding tube. Mine was no problem at all.

By the way, I still drink Boost. I like the taste of chocolate Boost and keep it in my office and golf bag for snacks when I feel hungry.

Danny G.