Hi everyone, my name is Fred and I live in Rockville, Md. I was recently diagnosed with stage 3 tonsil cancer and am now in my 2nd week of treatment. I have a total of 8 weeks of radiation treatment with 3 days of chemo. I am starting to feel the effects of the radiation in my throat and have some concerns. I was hoping to be able to chat with others in the same boat.

I am 53 years old and had just moved to MD from FLorida. I was here about a month and a half when I was diagnosed. Please feel free to contact me at [email protected]. I look forward to meeting you and chatting with you

Welcome to OCF Fred. There are many here who share the same type of cancer you have and we are all here to help in any way we can my friend. Ask any question you may have and Im sure someone will be there with an answer for you. Also there is a search engine at the top of the page here. Feel free to search on anything you may have questions about also.

Billy

Hi Fred,

I also had tonsil cancer with 2 lymph nodes - as you can see below.

I was treated in Bethesda, MD.

Send me an email if you have any questions.

Hi Fred: A warm welcome to the forum! I look forward to reading your posts and learning more about you and your current situation. It seems that each of us is able to contribute some useful information which is helpful to someone else!

As has been said many times before..we're all in this together..

Lois & Buzz in NC

Hi Fred,
I am a stage III/IVA tonsil cancer survivor myself. Almost 5 years cancer free now and doing pretty well. You can get through this. Take it one day at a time. Just know that it will get tougher and accept that. Stay on top of side effects and visit here often for help. Keep us updated.

Hi everybody,

Thank you so much for your replys and support. I fully understand that it will get much more difficult before it gets better. 20 years ago, I broke 4 vertabrae in my neck and was told that I might not be able to get out of a wheelchair. Today, I am about 98% functional with some small areas that still bother me. I am a survivor and a fighter and am going to beat this.

When i started my 2nd week of radiation, I wasnt feeling well, i was feeling tired, discombobulated and i was spasming something awful. Well I told my doctor this and they checked my labs. My creatinine was thru the roof and I was almost totally dehydrated. They admitted me on Tuesday and sent me home on Friday with my numbers coming back towards normal. I know that with cisplatin, this could happen, but thought that I was hydrating myself enough. I guess I wasnt. Well my next chemo session is on the 11th and we are talking about doing it as an in patient so that I can be hydrated for at least 24 hours and not have this problem again.

Im starting to get that sore throat that I was told about and not having fun with it. Have all of you had to get the feeding tube as your treatment went on?

Hi Fred,

My father just completed radiation on 8/29. He didn't develop most of the side effects until the last week of treatment. His RO did not suggest a feeding tube. Dad is still able to swallow his food, but his mouth is extremely sore. During treatment he only lost about 4 pounds (my Mom keeps the food coming all day long) and Dad knows that he MUST keep himself hydrated and swallowing food. He is determined and has been from the start that the feeding tube is NOT an option for him.

Everyone is different and many on this board consider the feeding tube a true lifesaver in these circumstances. Speak with your physician and go with what he suggests.

I hope your treatments go well.

Joy

HI, I am 33 days from my last IMRT session, and I had a feeding tube (still do, but stopped using it about 10 days ago). The throat discomfort I had was quite severe, where I could barely sip water. The feeding tube was the only thing that kept me alive during a span of about 4-5 weeks, so I recommend it highly (as the doctors did, they know...). I was diagnosed mid-May 2007 with stage 2 SCC on the left tonsil, and had 3 cisplatin sessions (brutal...) and 34 IMRT sessions at the same time. IT really knowcked me down, but I must say, after 30+ days, I am feeling kuch better. As aonther one said, take it one day at a time.

Fred,
It is mandatory to drink 2-3 liters of water every day. Not only will you feel better but it will prevent kidney damage from the Cisplatin. If you cannot do this make arrangements to get hydrated in the infusion unit as it's much faster and more comfortable than the ER. Keep a log of your fluid intake. If you vomit that water must be replaced.

You can do this Fred, remember you are not alone. There are very knowledgeable people on this forum.They will help you in any way with their own experiences.
You are on my prayer list,
Hugs Mieke

Hi Fred,
If you're already having issues with dehydration you may want to consider the PEG tube. Jack felt it was a lifesaver. Whether you do or don't get it keep swallowing every day to work those muscles. Gary is not kidding about the 2-3 quarts of water as well as about 2200 calories. Jack had 4 cycles of cisplatin and hydration helps with everything about it. Make a schedule for yourself to space out how much you need to eat and drink so it doesn't get away from you.
Regards JoAnne

Hi Fred, after my 10 hour infusion I had to go back the next morning for 2 bags of fluid so I would stay hydrated. The chemo made my throat sore and swallowing was difficult so this helped alot fighting the dehydration. I was able to stay hydrated and the swallowing kept the muscles going. I did not have a peg for feeding so I had to keep it all going down the throat. Make yourself drink and eat soft foods and soups. It will be easier for you in the long run. Feel free to drop a line anytime.

Fred, I agree with Joanne1981 and Gary 100%. When it got rough for me, I had daily fluids via IV with anti-nausea meds, which helped. At that point I just couldn't drink or pump enough fluids through the PEG tube to keep up, and the Drs recognized it and told me to get the IV fluids prior to radiation. Although the PEG tube is not fun, mostly annoying to have this thing hanging out of your belly, it is a life saver when throat pain gets too much to eat or even, in my case, to drink much fluids at all. I could barely sip water through a straw, tiny little sips, for a period. Please consider the PEG tube before the pain gets too bad and it becomes much more difficult to insert. Best of luck to you.

My doctors did not give me a choice on the PEG tube---I was getting one. I weighed less than 120lbs, so I guess they figured I couldn't afford to lose ANY weight. I continued to eat solid food throughout my treatment, so I didn't need the PEG tube for calories, but it sure was convenient for fluids. The day was not over until the allotted number of bottles of water either made it down my throat or down my tube.I could have made it without the tube(i only lost 4 lbs) and I hate the scar it left, BUT---you never know how your body will react in the final weeks. The PEG tube made staying hydrated no problem.Good luck to you, think good thoughts!