Hello all,

I finished my first out of 30 treatments today. They will be staying in the area of the primary tumor site and will not venture into the neck area. I am drinking lots of water and eating as many protein dense calories as I can get down in one day. I am doing this without the PEG since no throat/swallowing will be compromised. Initially my doc said they were going to hit the lymph nodes on the right side but decided against it. I asked the doc if it was because the tumor did not cross the midline and he concurred. Has anyone had the experience where radiation treatments were focused in the area of the primary tumor bed and no other areas were treated?

Fish,

I have had radiation beyond the primary site but I did want to wish you well. You will be done before you know it.

Glad to hear your ship is out of the harbor. My primary was BOT and nodes on one side. Nothing crossed the midline but the RO created a plan to paint both sides. I asked why if only tumors on one side. He said better safe than sorry and to be more aggressive. All my doctors, the MO, ENT Surgeon, and RO are of the be aggressive philosophy which was just fine with me. Too many people come back with recurrence. I sleep well knowing everything possible was thrown at it so never any second guessing on what else could have been done to avoid any recurrence.

You will be fine - Good luck,
Don

Yes and No. For my primary in the tonsil, which initially came back with BOT, Valleculla involvement, bilateral lymph nodes too, I had radiation to the primary, oropharynx atea, bilateral lymph nodes, basically from the nose down to the clavicle on both sides. For my recurrences, only the primary areas were radiated. Oral cancer is different than oropharynx. Usually surgery is the mainstay for oral cancer treatment, possibly with radiation, chemoradiation for larger T, and N disease, negative prognostic factors, which surgery you had. The oropharynx it's usually chemoradiation, but this area metastasizes quickly to to the lymph nodes due to the deep structure of the BOT, and Lymphoid's. I guess after the tongue resection, neck dissection, they feel they can eradicate any remaining cancer cells in the tongue. If cancer was to return, it's often at the surgical lines.

Fish - today being Feb 12th means you have likely finished the first week of radiation and are beginning to be an old hand at it. Is the mask still fitting okay? In the first week I had a little swelling that made the mask tight, but by week two it was back to normal(and by week 5 the mask started to get a little loose). Are you using dental rolls between cheek and teeth and between teeth and tongue? If you have metal (amalgam) fillings in your teeth they will help prevent tongue burns from the radiation. And did you get fluoride trays to help protect your teeth from the savage effects of radiation?

If you are like most of the rest of us you have about 5 or 6 weeks more of this before treatment is complete.

Keep us posted on how you are doing through the treatment.

Tony

Tony,

I finished my 5th treatment yesterday. You are correct, I am an old hand at it already. I basically am throwing off my coat and shirt during the walk down the hallway and dialing up my Pandora app on my phone to listen to music. Five minutes later I'm done. I haven't had any noticeable side effects to this point. I do have dry mouth in the morning when I wake up, but I've had this since after surgery. I don't have dental rolls but they do put what looks like a foam ice cream stick in my mouth to keep my tongue on the bottom in the area they are radiating. I jogged a couple of miles the other night and I'm working full time. I'm keeping up my caloric intake and also using the Whey protein supplement once a day. I have been using my dental trays every night before bed and also a water pic a couple of times a day. I am drinking approx. 11 cups of water a day. I'm taking 2 quarts to work in a jug and filling my coffee cup during the day. I am also drinking coffee in the morning still. I stay away from soda and sweets as I want to avoid sugar as much as possible. This treatment cannot get over soon enough. I am going to take bets on which lasts longer, the miserably cold and snowy winter or the treatment period. I'm betting the winter since I would like to jog/walk on March 15 in the St. Patty's day 4miler in Westport. I have already signed up for it. I figure I will make plans and if I am not up to it when the time comes, then cancel. Thank you all for keeping me going. I have found a great amount of information that is helping me through this and I cannot thank you all enough. I will keep you all posted same time, same place next week. Although its not the club that anyone wants to join, its members are a class act!

John

How much did you say the bet was Fish? I'd like some of that action please.

Sounds like you will be up for the OCF walk April 12 in San Antonio. You can always sign up on Team Uptown. I promised to walk it backwards if I get 20 people to join the team. Join mine and you won't need your own.

See you there.

That's all great to hear, John. Sounds as if you're hitting this head on. All those fluids and calories sound great! If you do the walk in March my hat, already off to you, will be... will be... well, I guess if it's off it can't get any more off. But more off!

Good thoughts your way.

I love setting goals! It gives you something positive to looks forward to.

Being almost a month post rads, you should be able to attend the walk. You will probably be on the weak side and might not be ready to walk a few miles. Dont worry, you can still attend and sit out the walking part of the event. There are several who attend that are not up to doing the few mile hike so you will have others to keep you company. Or you can always do only part of the walk.

You will LOVE the SA OCF event!!!! Elizabeth the hostess works so hard on it and there are so many survivors attending.

Going off to Rad #12 out of 30 today. I have developed a case of mucositis from the radiation scatter on my fillings. They have given me wax to cover the fillings at this point. I am rinsing every couple of hours with baking soda/water and have not tapped into any GI cocktail. I am watching what I eat, besides the banana that was irritating I am still able to drink my morning coffee and eat yogurt/grape nuts/canned mangos for breakfast. Getting ready to try out the steamed spinach and pot roast for lunch...shouldn't be any surprise here. I am drinking a lot of water and getting the mucositis in check. I am assuming at this point it won't all go away until after treatment is done, but if I can keep it at bay it will be tolerable.

A great report! Hang in there. You are right at the point when things can start getting rough. Only three things to remember: hydration, nutrition, and pain management. Keep these in control and you will make it through with minimal disruptions.
don

I'm really glad to hear things are going well for you. Stay on top of things like you are, my friend. You will soon be the second person with smooth sailing in recent months. It is a testament to the improvements newbies can expect between better treatment and all the fine folks here that help identify all the pitfalls to avoid.

You're a rock star Fish! I would use the Spanish version but I want to add the beginning part with that funny character that will wipe away my post.

I will be completing #18 out of 30 today. So far the side effects have diminished and I haven't had to break into my GI Cocktail (Licodane). My last taste bud died yesterday afternoon and now steak taste like spinach and potatoes taste like ribs. On a more serious note I am doing very well. My sores on the tongue have healed and the other sores around the cheeks are manageable. I have three to four cups of coffee a day(its the good stuff and yes I can still taste coffee!). My energy level is good and I am keeping on my weight. For those who will go after me please keep in mind that your attitude will get you through 90% of this treatment. The other 10% will be the tried and true directives that others before me have listed. Not all side effects will be the same, but if you are very disciplined in your care, you will most likely avoid the more serious pitfalls. 2 1/2 more weeks and I will be done! I am still prepared for the worst and hoping for the best.

That wonderful attitude you maintain is your biggest allie.

That steak tastes like spinach and potatoes like ribs is way better than my case was, where everything tasted bad (except Ensure). Ensure is what got me through the last 3 weeks of treatment and the first 2 to 3 weeks after.

I didn't reread all your thread before posting, but at the halfway point I expect my side effects were about the same as yours. The mucositis got worse in the last week of rads and then stuck around for another 5 weeks or so. Even then lidocaine got me through it, never needed anything stronger.

Coffee seemed to help with the ropey mucous that developed and still persists even today, 8+ weeks post radiation. But, that's about my only symptom now. I may be that guy that Uptown was referring to in the above post as I had very few side effects from treatment. So, there are people who get through it relatively unscathed.

Even taste has returned for the most part; beef still doesn't taste quite right, and some days chocolate tastes good and other days it tastes blah, but everything else is enjoyable.

Keep up that great attitude, you are an inspiration to others who will follow.

Tony

Fish, I sure hope you like spinach and ribs! You are doing an amazing job.

Yes, Tony, it was you. I know it was tough but you have now set the "walk in the park" standard for a journey through rads. Always share what worked for you so others have additional tools in their toolbox.

You two, have rocked it out of the park...like a BOSS!!

Treatment number 22 is today with 8 more left to go! I can really see myself in seven days participating in the 4 mile Westport run! Granted I won't be running this year but maybe a light jog for a little ways and walking the rest. So far the sores in my mouth have been held at bay. I don't have any pain in my mouth at this time! I am not taking anything but making sure that I am doing my salt/baking soda rinses two to three times a day, keeping my mouth clean and drinking around 1 gallon of water throughout the day. I have also kept up on my calorie intake. I haven't eaten the healthiest foods lately but I am planning on jumping back on the nutrition wagon this weekend. Tax season has been getting in the way of planning my meals. My weight is still holding and haven't lost any. My energy is around 90%. I had a sore throat a few days ago from the sores and immediately started gargling the salt water/baking soda rinse which extinguished the pain. Next week is a big week as it will be the last big chunk of treatment. I will be stocking up on nutrition this weekend and getting ready for the final big hurdle. My skin has a slight sunburn and I've lost a little bit of hair at this point. My face feels tight and my tongue has shrunk a little bit. I haven't had a problem with dry mouth except when I wake up in the morning. I'll post an update next weekend and a final treatment update the following week.

fish, you are doing GREAT!!!!! Your attention to your intake has significantly helped you sail right thru this far easier than most.

Continue to focus on your intake. The worst days are in front of you as rads gets progressively more difficult, even after its finished. Keep doing everything you already are and it will be over before you know it.

Treatment #27 today - I just started feeling the wrath of the radiation. But this is doable!! I was fatigued last night so I just spent the evening watching the tournament basketball games. The sores on the tongue where proclaiming their presence so I broke into my licodane and extinguished the pain. I didn't eat as much yesterday, but will make sure I make it up today. My tongue is swollen(this was overnight). Okay..enough whining and let you know my outlook. I am ready for anything this throws at me and will be done next Wednesday. I know it will get worse before it gets better, but I am ready. Overall, side effects are manageable and I haven't missed a day of work! I'm not working a full tax season schedule, but I understand this is why I haven't hit the wall to this point.

Glad to hear progress with a BIG smile on your face.

Nice to hear you are hanging in there with such a great attitude! I'm looking forward with you to Wednesday. The last day really feels so good mentally.

Last radiation treatment is in one hour! I did participate in the 4mile Westport run last week albeit I only jogged a mile of it and I wasn't worn out when I finished. The mouth sores are still waging war and trying to get the best of me. I have figured that if I snack a few times during the day it actually helps exercise the mouth and keeps the pain in check. Yesterday was doctor day. My weight is the same as it was on day 1. I am backing off the gas pedal a little bit on the calories. I still have around 15lbs I could give. I am anticipating I'll lose another 5lbs by the time this is done. The feeling on the left side of my face is slowing returning. Overall, I am in good health and still have my attitude! I am anticipating another couple of rough weeks. I haven't missed a day of work but the hours are not true tax season hours. I'm averaging around 40 a week. I'll post updates once a week in the after treatment section and close this.

You sure do have an attitude Mr. Fish! Congratulations! Hard to believe that parts over. You did a mighty fine job.

Fish,
You are doing amazingly well. Having lost not a single pound by end of rads - I would not count on losing the spare 15 at this point. You may very well just level out then improve on where you are now. Hang in there!

Yeah... fish... !!!! Woot.... two more weeks of HELL (post treatment) then hopefully you'll begin to make your way back to normal... ish. hugs!

Tony, do you recall why you did not get chemo?