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.

Laura,

I wish you nothing but good things. God bless and keep you on your journey. It will go quicker than you think but longer than you would like. You are young and strong. Fight.

Keep in mind that the rest of your, and your two beautiful childrens lifes wait on the other side of treatment.

If there is anything we can do please dont heasitate to ask.

God bless
Robert Christine Alison Robby Tommy Billy And Scott

Gosh, thanks so much for all the positive feedback. I know I can do it. I had a good day today with eating and I started supplementing tube feeds at night which is going well. I think controlling the heartburn is key for me. I figure every day I can say is a good day is a blessing!
Hope everyone has a good, healthy holidays with their loved ones!

Hi Laura,

Sorry to hear that you're having such a rough time so early. You have a great attitude and that is going to help you alot.

Please keep posting and I look forward to hearing about things getting easier.

Happy holidays to you and your family.

Jerry

Laura,
ask your oncologist about Pepcid AC (Famatodine) for the heartburn - it is a side effect of the Cisplatin. If you are tube feeding - do it slowly that will help also.

Laura,

Instead of Boost you may want to try Jevity. Jevity is available by precription and may be free depending on your insurance plan. My family member (ca left later tongue) had a lot of problems with nausea but the Jevity seems to help. One can of Jevity provides about 265 calories and 10 proteins. To augument this there is a product called Benecalorie which comes in a little round container and provides over 300 calories and 7 proteins and it can be added to the jevity or boost. Also available is Beneproteine which comes in a powder form and each scoop provides 5 grams of protein. These can be added to the jevity or boost as a supplement. Both benecalories and beneproteine are available through a Walgreens.

Sorry to hear about your experience with amiphostine. My family member was able to withstand about seven treatments and then eneded up in the hospital due to a bad reaction and that was the end for amiphostine.

My family member had 35 radiation treatments and 4 chemo treatments with cisplatin. Treatments ended in late July 2005 but the side effects persists. The worst one is with a very thick mucus which won't seem to go away.

We were in a similar situation with one positive node and focal extracapsular spread. We decided on both radiation and chemo to reduce the statistical changes of a recurrence. I believe in spite of the side effects we made the right decision.

Hang in there as the chemoradiation is doable.

Make sure you start adding some source of extra fiber if you stick to the boost or it will cause constipation (which can be a double-whammy if you're already constipated from pain meds). Jevity has fiber in it, which is another benefit of using the Jevity if your insurance covers it. My insurance is a fairly average blue cross/blue shield plan and they cover it.

Nelie

Hello! Happy to report I am halfway through with my treatments. I completed #16 yesterday. The only really bad thing is the ulcers in my mouth. They are on my tongue, gums and lips. I am taking concentrated pain drops - Oxydose, which I would recommend to everyone - so I am comfortable, but I can't eat anything, and it's hard to talk. I am now on continuous feeds through my tube. I guess this is to be expected. But I think my mouth looks pretty bad. My oncologist held my chemo this week, because that can make the ulcers worse. She didn't think it would affect the overall treatment plan. It was kind of nice not to get the chemo.
I know the first half is the easy half. But I survived this far, and it hasn't been too bad.I'm still on the 'Take One Day at a Time" Plan and this works for me! - Laura

Hang tight Laura. There is light at the end of the tunnel and you are moving closer to it every day.

Bill

Laura,

When I was undergoing my radiation treatments I also had some painful ulcers. My Radiation Oncologist gave me a bottle of Ulcer-Ease. It REALLY helped. I would apply it with a cotton swab or swish it around for a short period of time. It gave immediate relief.

Keep up the good work. It will be over before you know it.

John

I'm finding the first half of the plan has been the hardest for me (to almost week five) but I'm only having radiation. This was esp true because the amifostine and I became allergic to one anthother about that time, so I just come in and lay down on the table without the preliminaries.

Also, I will have two stages of "boost" under my rad plan (I'm in one now and the next starts next [my last] week) and these seem to be have a lesser overall effect on me, altho I might just be becoming adjusted to the changes.

Once I got going on my PEG and used to it, it became "normal" and less of a hassle.

I find I want to gag everytime I try to brush my teeth, so I do that first and get it out of the way without losing food or meds.

I have continued to sip water and take most meds by mouth in order to hopefully make the return to real swallowing less of an ordeal.

Pete

Laura,

I had a lot of mouth ulcers too by the halfway point and they also gave me oxydose and delayed my second chemo a little (in my case that was also because of low WBC). So it all sounds pretty familiar to me. The One Day at a Time plan is the only way to go, especially from here on in.

I hope you're getting lots of support from family and friends during this time and that your children are helping to keep your spirits up. You're in my thoughts....

Nelie