Hi all,
What a great site to have for this terrible disease. Thanks to all that built, support and contribute daily!

I had my 3rd IMRT Treatment today. No bad effects as of yet but I know they are comimg. For those that have been through this would you please tell me the 1 thing you would have done different or the 1 thing that helped you get through it the best.

I also wonder what are the real chances of getting rid of this cancer and never seeing it again? The doctors are very non committal. I am totally confused about this as it seems every where I read that no significant improvement in survival or treatment has been achieved in over 30 years with the exception of Erbitux. I guess I'm really trying to find out if I'm like the movie "Dead Man Walking" or can I really beat this thing for the long term?

I am currently at MD Anderson doing the radiation treatments. My staging is T2N1MO. Before returning to MD Anderson for the rads I recieved 3 - 3 week cycles of induction chemo. During the 1st 2 weeks of each cycle I recieved cisplatin, taxatere and Erbitux - the 3rd week of each cycle recieved only Erbitux.

Would really appreciate your comments and opinions as I am trying to get a firm grip on this whole thing. Thanking You in Advance!

Deano, the major problem I encountered was dealing with nausea. I did not get a tube so just about everything they prescribed had nausea as a side effect, even some of the nausea meds. When I couldn't swallow due to pain or I would start to gag and the nausea would start, I started to cut down my "feeding" and water. After a few days my body would start to shut down on it's own and I ended up in the ER 3 times, the last of which was a week AFTER my last rad. They put a tube down my nose which helped me greatly overcome what was now cronic nausea (my def) meaning I could think myself into nausea anytime I tried to swallow.

I also found a liquid product Carnation Instant Breakfast that has 560 cals per 8 ozs. See Great Product post earlier. That helped me a lot because I wasn't faced with swallowing near as much as with other liquid products.

I also didn't find this great site until after my last hospital visit which would have helped me greatly during my ordeal. Oh well, at least I found it.

You will benefit greatly from the experiences of others. Don't ever think your question is too small to ask.

Hmmmm, the one thing I would do differently is have fluids on the weekends. My MO nurses gave me IV fluids everyday, but they didn't work the weekends. I could have gone to the bone marrow tranplant floor to have fluids but I tried to tough it out. Both times that I got severeley dehydrated was after a 3 day weekend. It didn't help that I didn't manage my chronic nausea that well. Zofran dissolved in water through the PEG is what finally set me free from constant gagging. Of course most of my nausea was brought on by chemo. You didn't say if you were having chemo. The fluids helped get through radiation I'm sure.

God bless and let us know how you are doing.

Deano, speaking from a caregiver's perspective, I wish I had known how tired John would become during rad. txs because his reaction scared me badly. It started to hit him about 8 treatments in and lasted for several months after they were over. There were days where I would check on him every hour or so just to be sure he was still breathing! [I know it doesn't affect everyone the same and hope you will not have many problems] He did have a peg and Thank Heaven for that. AS to you "Dead Man Walking" question, there are many survivors posting here, and many more who are out there living their lives. Take the very best care of yourself during treatment, it will help you get through it. Amy

Deano --

First, since you have a base-of-tongue cancer, if you are a non-smoker, there is some chance it is due to human papilloma virus. At Hopkins, where my husband was treated, they test every tonsil and BOT cancer and are finding 60% or more are HPV positive. I hasten to add, this will NOT change treatment protocol but it does seem to mean a better response to radiation and also, a lower rate of recurrence. If you want to find out about this, ask your oncologist, I would expect MDAnderson can test this -- Hopkins also tests outside samples, including pathology slides if that's all that's available: http://pathology.jhu.edu/labservices/hpv.cfm
(search OCF web site for more info on HPV)

As for putting this behind you, my husband was diagnosed in June 2005 with Stage III/IV tonsil/BOT and two nodes, HPV+, he went through 33x radiation (tomoTherapy IMRT) and 7x chemos (carboplatin), and also took amifostine most days. No surgery other than his initial tonsillectomy when he was diagnosed. He got through the treatments in good shape (considering!), ate all the way through though at the end it was mostly liquids and purees. He did lose about 20 pounds, but much of it in last week when he got a blood infection. Finished treatment end of September '05, by mid-October was out birding again though of course for limited amounts of time. By early December was attending various pre-Christmas social functions and could eat regular (albeit carefully selected) restaurant food, in January we went on rather arduous birding trip to Sierra Madres in Mexico, where he was out all day, however he found that most Mexican food was still too spicy for him (ouch!). Since then he has continued to recover well, I would say pretty much back to normal re eating etc. except still needs to regain about 5 pounds weight and drinks a lot of water when he eats dry foods. Also foods spicier than "mild" salsa still burn too much, so still not 100% back to normal in that regard.

Side-effects which nurses and doctors forewarned us about (and tried to mitigate) included trismus (restricted jaw opening) -- used a TheraBite device all the way through & continuing up to present, dry mouth (thus the amifostine use, nasty stuff but seems to work, also he now takes Evoxac, has about 80-85% salivary function thanks also to precision of his tomoTherapy radiation), hearing loss due to cisplatin (he already had high end hearing loss due to infections as a kid, so MO gave him carboplatin -- a less toxic drug which works about as well), mucositis (mouth sores) -- tried various things to ameliorate, mouth rinses, GelClair, l-glutamine rinse, aloe vera swish -- something seemed to work as his mouth didn't get as raw as many folks' do, but still got very painful, was on 25 mcg Duragesic patch for some weeks including after end of treatment. He took 500 mg. l-carnatine per day to reduce fatigue. The hospital also monitored his red blood count carefully and would have given him Procrit if needed to prevent anemia, or platelets if needed as well. He didn't have to have this, others did. Depends a lot on individual's response to the chemo drugs. The hospital was careful about adequate nausea control, which requires rather expensive drugs but worked. If you go to the OCF web site and look at the "side-effects" pages, they full of vital info. Much of what we knew beforehand came from these pages.

Barry is one year out of treatment now and all his scans etc. have shown "no residual or recurrent cancer" (quote from report) and all his doctors think he is doing great.

Barry was telling me just today that he is not looking back anymore but feels it is now time to look forward to the rest of his life! We are going to Panama in December and perhaps Uganda in March., no time to sit and worry!

Gail

Deano-
I was diagnosed with base of tongue/tonsillur cancer with mets to left lymph nodes. I had surgery-radical neck dissection and at the site. I took amofostine and cisplatin,with bilateral radiation. I needed the tube, I couldn't swallow and later on wouldn't even try. I kept the tube a year or so to ensure I was able to get suffcient fluid. Carnation Instant Brakfast was my first fluid. I had horrible nausea, and vomited 4-5 times daily. Taking intravenous fluids along with anti-emetic meds helped. Going to hospital for IV fluid on weekends helped the most. Gargling with "magic mouthwash" proscribed my rad doc soothed my throat after I was sick.
I often felt so bad that I was sure I was just going through the motions for my husband who was insistant that we do the most aggressive therapies we could. However, I still have some saliva thanks to the amofostine, I lost some hearing due to the cisplatin, and since I didn't work my jaw muscles, I have trismus. But you know what- I'm very alive four years later. I'm in college working on a BSN. I'm around to raise our thirteen year old daughter, and I do as much sevice work as I can in my community. Stick with your treatment, there can be a wonderful life after it, no matter what it's length. Sue

I finished radiation 3 months ago and kept a sort of diary on my experience on theocf in the currently in treatment section. i encourage you to check it out. i'm doing very well these days. just got good results from my 3 month post treatment pet/ct.

Deano - Hydration for sure, and as many calories as you can manage. But my biggest regret was not keeping my jaw active - stretching it DAILY and with 'vigor'. I lost a great deal of jaw motion from the IMRT, and didn't realize it. Get a Thera-Bite and use it till it hurts. Get a script for physical therapy to keep your neck and jaw loose.

Dead man walking? Not hardly. I'm three years out and doing great. Each time this thing knocks you down, you get up again. Keep getting up. Lots of us have done it. You will too. Be strong. We are with you. Tom

I don't know how differently I would have done things. I am a caregiver, but a couple of notes. I added up every ounce of water my husband drank and forced him (in my gentle loving way) to be at 2 quarts or better everyday. He had the PEG tube put in before radiation even started. He wanted it out after the first few weeks of radiation because he was still eating so well, but by the end, he absolutely needed it to get nutrition. Keep swallowing water, even when it hurts, so you don't lose those swallowing muscles. Keep trying new foods. When you can't eat something anymore, try to find a substitute. Expect to throw out a lot of food. One week, my husband loved yogurt. I went out and bought 20 containers. Next week, it hurt to eat it and I wound up throwing it out. I was desperate to feed him (a caregiver thing, I think)and probably threw out $50 in food every week. Prepare for depression, pain and survival. Don't go running up those credit cards, because you just may be around a very long time and have to deal with them!

Thanks so much for the replys, any other suggestions are welcomed. Keep them coming!