1 down 34 to go: I had first of 35 rad treatments today. For those who haven't yet heard how a treatment goes, here's a description.

Lay down on table, put head into a cradle that exposes your neck to the upcoming machinations of Dr Mengele. You will feel like your chin is stuck straight up. It puts a little pressure on back of your neck.

Radiation therapist installs 6 gauze dental rolls, two on each side between tongue and teeth and one between teeth and cheek. These dental rolls absorb radiation splatter caused by amalgam or other metal filling and help prevent damage to tongue and cheek.

Head gets locked down to the table in your mask. If you're claustrophobic this might be an issue. I'm not, it's just uncomfortable.

Shoulder restraints get installed to push your shoulders down toward your waist.

You will naturally cross your feet, they will uncross them and velcro both feet to table. Then they will put a pillow under your knees.

The IMRT machine also functions as a standard x-ray machine. They take two images (top and side) for beam alignment purposes.

Then the big radiation head moves around you in a circular arc from below right shoulder, over the top, all the way around to below left shoulder. It stopped for me in about 8 locations and each time I could hear the whir of the machine, which I imagined to be radiation in progress.

When they turn on the overhead lights you know you're through

Tomorrow morning, same time same channel.

Tony, now you are a
pro since you have the first one behind you. Most people are afraid of the unknown. Now you have a glimpse of what rads means to OC patients.

Please pay special attention every single day to your intake and push yourself to take in a minimum of 2500 calories and 48 oz of water every single day. Even when the going gets tough, let that be the bare minimum you take in and you will get thru rads easier.

Good luck with everything!!!

You did it!

Good luck with everything Tony! I try to think of it as every treatment making me more healthy in the long term.

It should go quickly. I am sure. It seems like a long haul but I was just realizing that this week is week three for my father in law. He is doing amazingly well (doesn't have nearly any of the normal problems we have because radiation is aimed further down. And as of last Thursday he is eating better and feeling little pain. He's only getting treatment for 5 weeks soooooo two more to go!!!! One foot in front of the other and you will be done in no time. hugs

2 down, 33 to go - No, I won't report on every treatment unless I have something to say. Today the mask was a noticeably tighter fit. RT said sometimes we do get swelling.

She also asked if I was using fluoride trays (I am) as she says most/many opt for teeth removal prior to rads. That surprised me a little. She didn't qualify it in any way, such as for people who have lots of dental problems.

Oh well, tight mask was tolerable, we'll face tomorrow ... tomorrow.

Still hangin in (a good mental place)
Still hangin out (doing what pleases me, today bridge)
Still hangin around (happy to be alive, I will not go quietly into that good night).

Tony

Good stuff Tony. I am interested to hear how the gauze rolls help reduce the effects of radiation scatter off your fillings. I did not have them and have a small lesion on the side right part of my tongue. I started holding my tongue under the teeth in the gap at the bottom of my mouth and it helps somewhat.

Also interesting to hear they strap your feet down and your shoulders. i don't have either of those things. Betting it's just for extra stability and probably not all a bad idea.

The mask will loosen over time as you'll lose some weight.

Hang in there. You've started and now it's just a countdown till you're walking down the right side of the bell curve.

RT's remark re teeth is soooo wrong. Patients that need dental work should have it done pre radiation. Patients that have good teeth protect them and their gums as much as possible during and post Tx and do NOT have them pulled just because they are facing radiation.

Don't worry about the tight fitting mask. For about 30 mins after the early rad sessions I looked like I had been hit in the face with a tennis racket. Then I lost weight and the mask was loose. Some loose so much weight they get a new mask.

One radiation facility used a plastic exercise stretch tube you held in your hands by the handles, and tube went around the bottom of your feet, while getting radiation, which pulled your shoulders downward, so there was no need for the shoulder straps. I never had my feet tied down, although, I think it was threatened if I didn't stop moving all the time.

Interesting mask stories. Maybe because mine fits around my shoulders is why I'm not strapped in. I always seem to hit the line up points perfect when they turn the lasers on. I have to remember to get the techs to take a picture of me strapped in before my last day for posterities sake.

3 down, 32 to go - Well, it seems like every treatment is different than before. Today, they just handed me all the dental rolls and said you know the drill, get busy. They did check them for proper placement.

Mask fit better in some areas and worse in others, particularly across the forehead. Overall, comfort level about same as yesterday. Sooner or later you realize it isn't going to get any better, so you just suck it up and say let's get started, which is exactly what they want to hear anyway.

It seems today took less time than previous two treatments.

Brekfast afterwards, eggs, sausage, biscuits, OJ sure did taste good. And that nap after geting back home is awfully nice too.

Knocking this thing out, one day at a time.

Interesting mask stories indeed. Mine goes all the way down to my chest and has a built in mouth piece that you bite on and that is the only thing they use - no extra ties, restrains etc. They even give me a nice cushion to put under my knees. Maybe tomotherapy machines are different.

Tony, you are doing great! Keep enjoying those good breakfasts.

Hi Tony,

You are right. May as well just get used to it. I was able to wiggle my head a tiny amount to find the most comfortable place. It was not a big deal as the machine I was on went very fast. There were days when I was on and off in 5 minutes. The scan took just a minute for each pass, back and forth.

Enjoy that meal while you can. At a minimum you will most likely lose your taste and find it hard to swallow. You'll get through it, just not much fun.

I'm just five months post and still will drop off for a nap now and then. Sure feel great.

don

4 down, and a great medical report - Well, I was going to wait until tomorrow to report after 5 treatments down, but Thursday is doctor day and too much good info to wait until tomorrow.

I had wondered if RO every compared the neck CT he did to the original CT done before surgery (the one that eventually located the enlarged lymph node). Sure enough, he had compared them and said his CT shows no swelling at all, ie back to normal size, so I'm restaging you T2N0, what you were originally. Wow, that alone made my day.

Then I asked more about my path report, invasive and moderately differentiated. All along this phrase has scared me. He said invasive is just a synomym for you have cancer. You are getting invasive and agressive mixed up and your tumor is NOT aggressive. Moderately differentiated tissue isn't the best, but it's not the worst either, so stop worrying.

So, I asked what will tell you that chemo is needed. He said if the radiation doesn't work and we won't know that for awhile. I then asked about the two small masses in the bottom of each lung to which he said everybody has something in there. You are scheduled for another chest CT in December, so sit tight and wait. You are making much more out of all this than you should be.

I said, hey I'm just being your normal patient asking all these questions. His reply, not you are not normal. Most of my patients don't want to know what they have or what is going on. You are just very curious. Keep on asking questions, I'll keep answering them.

Everything wasn't rosy - the dietician fussed a little because I had lost 2 pounds in last 18 days. She said, eat, eat all the time, eat 3 meals a day with snacks in between. Eat ice cream, eat dessert, I know your throat hurts, but eat anyway. the doc will give you a prescrip for a bigger bottle of oral lidocaine. Don't you come back in here next week having lost more weight.

I had just gone down one waist size on my jeans. She said that is not the way to do it. LOL.

Overall, a really good day for N74TG (we even came in 2nd in bridge).

thanks for enduring me guys
Tony

P.S. After all the recent discussion of manuka honey I asked the doc about it. He had never heard of it at all. He said since you're going to Walmart anyway pick up a gallon jug of consumable aloe vera liquid. Aloe vera has been through many medical trials and it's anti-inflammatory capabilities are well documented. Maybe someone will do a medical trial on manuka. I suppose I can kind of see why he would want to go with what he knows is successful. Still, I may buy some manuka anyway.

Great news Tony. I hear you on the nagging about the weight loss. I didn't get why a couple of pounds was such a big deal at first but the nutritionist said you'll stop losing fat weight and start losing lean muscle weight at some point. Of course I had chemo also which triggers that so I'd say you're doing pretty darn good at this point and have far less to worry about on that front. Keep up the good fight.

Tony,

It appears you and I are in the same "want to know everything" club. I think you signed up for my journal. Most have not the time, interest, or patience to wade through it all but early on I decided to journal every day as best I could. For those wanting to walk in the shoes front to end will collect many tips to easing the journey.

Just so you know how far I went into the research end was that I finally said enough once I understood what the dosimetrist and medical physicist did beyond the hardware and software used. I even had my RO a bit off guard when I asked him which software they were using for mapping and dosing. Did get quite a good bit of info on how painting works, contouring, etc. I made the point since no cancer crossed the midline, maybe he could review and adjust the rads hitting the salivary over there. Whether they made any further adjustment or not, my saliva production throughout was relatively good, low point maybe 50%. 5 months post it is 95% back. Just a few really dry breads and overcooked chicken breasts etc stuff my mouth up and require assistance from a glass of liquids.

Since you are getting rads, I am sure they have targeted all the direct areas and all other areas are painted but receive a lesser dose. The RO told me even though no cancer over the midline, they were going to paint 60 grays just in case of small undetectable cells.

Chemo can also kill microscopic cancer cells too. Even though the 3 cycles of TPF for 9 weeks really messed me up, it lets me sleep VERY well knowing there was a full assault to systematically kill any micro cancer anywhere else in my body.

You have a great warrior spirit; you'll be fine in the end, the trip gets pretty bumpy.

Don

Thanks Don - I can see I have come no where near the level of research you have done. Ironically, I used to work in industrial radiation so I actually understand a lot about it and particularly dosimetry. We did all our work with gamma and neutron radiation types, x-rays no matter how strong they are just didn't have the penetrating power we needed in the logging of oil and gas wells.

I'll see if I can hook up a meet with my dosimetrist, as I'd love to get a demo of the software he/she uses; that would be really cool.

Thanks for the heads up. I have plenty of reading on your blog left to do, but I'll get there.

take care
Tony

Had an epiphany today - With this case of is it strep or is it not strep sore throat that's been going on for a couple of weeks I haven't felt like doing much of anything. Whole days pass with me napping, then up for an hour, then another nap; no wonder my night sleep is so messed up.

I am building a house and it will be time soon to buy the insulation. I found out our local post office is getting a new roof of 2" thick industrial closed cell poly foam (good stuff). So I asked the roofer if I could have some of the old stuff. He said yes and even better he will bring it to my house to avoid city dump charges.

I'm going to post this and then continue because last time I tried this it never posted. I'll continue in next post

Needing about 100 sheets more than a truck load I asked if I could load my trailer from their pile; he said sure. so the last two days I have been hauling 20 sheets of 4x8 at a time to my house site.

Here's the epiphany, because I'm not thinking about it while working the throat doesn't hurt nearly as much. Epiphany #2 I have way more energy than I thought I had. It was actually nice to work up a sweat and get something productive done at the same time. I actually slept better last night than most nights, I expect same will occur tonight.

Yes, I'm only in week one of radiation and I'm sure it will get worse later, but even then I may not be totally worthless.

Thanks for indulging me guys.
Tony

I lost all my teeth 1 year post treatment. I had great teeth prior to Tx and it was just bad luck of the draw. Calories and water were never discussed with me, and I'd still have my teeth if they were. Listen/EAT/Water. It's all about that stuff
Fair winds and Following seas
Remember those three things.

Another Good Day - Hey the mask was actually comfortable today, if a mask can ever be "comfortable". It seems like it's taking less and less time to get me positioned on the table and in alignment every day. I know in the beginning they fussed and fretted for what seemed like 10 minutes before rads actually began; now it seems like 2 minutes and that cute little RT is saying "okay hun see you in a few". In fact all the women at the clinic seem to call me "honey". Don't burst my bubble, let me enjoy it just a little longer before telling me they call all the men honey.

So, rads go smoothly, then off to the dentist who gave me samples of Mucotrol (concentrated oral gel wafers). Then it's off to get another 80 sheets of foam insulation for my house. Beautiful weather outside, sunny and high of 73. I actually wore shorts to work this afternoon. More work means the mouth doesn't hurt as much. Drank a lot of water while working.

But in the Zen nature of life a little pain must come. I think maybe I'm beginning to get trismus. My mouth will only open maybe half as much right now as before surgery. I showed the dentist and she agreed, stretching exercises are in order. So, the whole time I'm driving back and forth to get foam I open wide, move jaw left to point of pain, then same thing to right. If this is not the right thing to do, please let me know.

Do the exercises several times per day. I always did them both going to and going home from treatments, along with a few other times during the day.

7 down, 28 to go - Hey, I'm 20% through, may not sound like much, but it's way better than where I was at the beginning.

The mask felt good again today, so much better than last week. Felt good means it didn't actually hurt to have it on.

I did learn something new today. My primary RT wets the dental rolls and squeezes then down to a smaller size before I install them in my mouth. Today the helper gave me the dental rolls and didn't wet or squeeze them. They are a lot harder to install dry. So, tuck that away for future reference if you are using dental rolls.

Sometimes we just get lucky. I had to arrive early today at the clinic. For some reason the prior patient was running late, so they just reversed us on the schedule My original 45 minute wait just literally evaporated once I walked in the door.

You know it's a lot easier to keep a positive attitude when good things happen. I know the worst is yet to come, so I'll just enjoy now while I can.

later

8 down - Well today was a surprise. I arrive at the clinic to see two young shining faces at the console with my RT. "Wednesday is teaching day" is the greeting, so I meet the two "students" both mid-20's, one guy, one gal.

They are ready for me, so in we go. The girl hangs back, only the guy comes in with us. Strap me down, RT says "okay hun we're going to get started". They all leave and I lay there in my mask for 10 minutes before anything starts whirring and moving.

Okay, okay, okay, let's do the teaching after the rads are done, more importantly after I'm out of this mask, good it fit well.

You know, I really don't have anything to complain about.

Tomorrow is doctor day, and I've got a whole list of questions to ask.

I remember one day when my tecks were standing over me after I was strapped down and ready to go and feeling a tad nauseaus and they engaged in a personal conversation. I had to speak up and remind them I might PUKE if they didn't hurry up. Seemed to hurry them along!

10 min strapped down in your mask! Unacceptable! Yes, you do have something to complain about. That should not happen again.

Out of the 35 sessions I had, there were a couple times delays were encountered. But of the 30+ sessions where I was on and off in 10 minutes total, on balance I am pleased as punch the newest machines were used.

From what I read here, there are those who have older technology which takes longer plus are less reliable with breakdowns requiring skips and reschedules. Only once did I get a call and told there would be a delay; in the end, all of which was a couple hours.

Remember, the qualified tech who diligently performs your daily treatment was in training in the past as well. You benefit each day from the minor inconvenience from the one who suffered some delay. Consider the training days as "paying forward" your gratefulness for having such qualified staff in YOUR time of need.

And think of all those around the globe who do not have access to such wonderful technology at all and just die.

Delays happen use to technology, alignments. Once, when I was clamped down, the machine broke down, and session was canceled. My treatments normally lasted approximately 17 minutes, with 18 zaps, bilaterally.

I'm odd man odd out it's just that it happened before it even started. Ugh you all are kinder than me. Then again, my mouth piece made my saliva pool up so bad, I would have never made it laying there an extra 10 min without choking.

Keep up the good fight and maintane the WARRIOR spirit and all will be over soon. It gets harder before it gets better, alot like Boot Camp!! Semper-Fi Bob

9 down, Another good medical report- Guys the title says it all, I'm pumped, N74TG had a great week. But it gets funny along the way. I mean make you laugh kind of funny, so go get an adult refrishment and read on.

Of all the days to oversleep, doctor day is not a good choice. I never oversleep (well at least not until today). When I look at clock it's 20 minutes until appointment time. So, get up, jump into a pair of jeans and tee shirt, brush teeth, forget shaving, no time, out the door.

Yesterday, RT gave me two packs of dental rolls. I'd asked for them so I could put them in upon arrival and walk into treatment room ready to go. So, driving over (8 minute drive) I realize I have to get rolls installed. Fortunately I have a cup of water sitting in cup holder, so it's tear open the package and dump them into water. It went down to like 29 degrees last night, but water hadn't frozen YET, but on putting in the rolls, it turned into a frozen slushy instantly. I'm sticking my fingers in to pull one out to squeeze it out and intstall it, but I'm having to fight all this ice. My fingers are freezing, I'm trying to drive the car. I get one out, squeeze it down, install it and this frozen thing hits one of my fillings, not cool, it brought stars to my eyes. With frozen fingers I finally get them all installed and arrive at treatment center. I walk in (one minute late). My RT is standing at the door, hands on hips with NOT a happy look on her face. I say I'm sorry to be late and between what seems like clinched teeth she say it's okay. So I literally run down the hall to the treatment room jump on the table, apoligize to her assisgant, who say no problem (sometimes we run late too). We get strapped down and treatment started. She doesn't come in room today and she doesn't say okay hun we're getting started.

Rads go okay, though I did lay there for at least 5 minutes before first field administered. I think she was punishing me (not sure though).

So rads are finally over, they hand me my file and say go see the doc.

Nurse weighs me, lost 3 lbs this week, but hadn't had brekfast yet today, so nurse isn't too bothererd. She asks the standard stuff , any diahrrea, any nausea, how much fatigue, are you using the Aquaphor, how much how often. (I need to use it more).

Then it's into doctors exam room. OOOH, we didn't do this last week. He comes in says open up and say ahhh. Of course he grabs a tongue depressor and mashes until I gag (I think he does that to check gag response, sadistic SOB, sorry, no profanity on the forum).

He says I see no cancer this week. I say huh, what does that mean, he says it looks like a normally healing surgical site. I ask for dimensions, he says 1cm deep and 1cm diameter, full of exudate. I look puzzled and he says pus. He says I'm happy with what I see, you are healing normally, and radiation is having a positive effect on the cancer. So, what questions do you have for me today. Imagine that, he assumes I will have questions.

So I tell him I'm still bothered by this radiation only versus chemo and radiation question. . Do you think I need to be having chemo also. He almost immediately shakes his his head NO. I ask him to explain further. He says excuse me a minute and leaves . I think boy I've pi$$35 him off now. He returns 5 minutes later with a copy of the NCCN guidelines for the treatment of my specific diagnosis. There it is in plain English, for T2N0, with no lymph node involvement...radiation only. He further adds 1. the VA wouldn't pay for it because it isn't part of NCCN guidelines and 2. the bad aspects of chemo for this diagnosis are worse than the benefit to be gained, so until your diagnosis changes it's no chemo for you.

I say, doc this one piece of paper answers all my questions for today. He said I thought it would.

I go home, I'm satisfied he is doing the right thing. That matters a lot to me. So, on the way out I tell the receptionists (2) the story about the frozen dental rolls and ask about my angry RT. They both laugh and say, oh yea, Christi doesn't have much of a poker face. If she's upset you will know it immediately.

On top of all this good news I got to have dinner with a lovely woman tonight. Like I said before, it's been a good week for N74TG.

Maybe I'll take Christi a cup of Starbucks tomorrow morning.

All you guys have a great weekend.

Tony

Good for you, Tony! It helps to be sweet to the "Christi" types. And your lovely woman dinner companion is lucky to have you!.

It is in plain english, but your RO only showed you one type treatment, not all of them as reccomemned by NCCN. NCCN guidelines indicate 3 modes of treatment for T2 oropharyngeal cancer 1. Radiation 2. Resection of primary with ipsilateral or bilateral neck dissection 3. Radiation with systemic treatment (chemo/targeted therapy), It's just a guideline, and not set in stone, and other matters are taken into account. If adverse effects are still there they move on to the next step. Your next step after radiation, if it fails, is really salvage surgery, not chemo, which doesn't kill this cancer on its own, and would be palliatve only, but chemo can be given with radiation after salvage surgery to make it work better, get any distant, microscopic cancer.

Good luck.

Tony,

Great report. My diagnosis early on (pre-surgery) was going to be the same as yours. Had my ENT been able to remove the tumor/tonsil then my MO said chemo likely would not have been used, just radiation. Given the tumor attached itself and was left in then I was having both.

The only thing I will ask is have you had a consult with a MO during this? I ask because MOs and ROs do disagree on a lot of things. I feel better asking the same questions of both.

Keep up the good fight,

-Rich

Tony, just as a measure of support on the "no chemo", when I got my pathology with clear nodes, the RO said I had the option of doing radiation or not, but that there would be no chemo as it was being used as prevention (ie to hit any of the cells that may or may not be there but don't appear as a mass or anything they could see) not "treatment" per se, so I get the concept.

I trusted my team, so I was good with that advice.

Great report Tony! Hope you keep doing well.

This whole discussion of chemo or not really stresses me out (every time I worry that I should have gotten chemo too) so i can not be objective, only say that I really hope the doctors chose the best option.

First Symptoms - It's Sunday after 10th treatment. I wake up this morning and left outer edge of tongue feels sore, a little maybe like a hot coffee burn.

No, I didn't burn it with coffee. It hurts a little to talk, but not bad. I can still eat.

Tomorrow I will ask RT/RO if I can start using two dental rolls on left side (the tumor side) in case it's caused by radiation splash from my metal fillings.

Just documenting symptoms for timeline purposes.

Tny

Yoohoo - today is 1/3 through - It may not seem like much to some, but it's a big thing for me today.

12 down 23 to go. Seems like the sore mouth symptom is getting a little worse, not a lot over Sunday. Taste is beginning to go, only sweets still taste good.

I can still eat bread, so saliva is still there on both sides.

Seems worst symptom is outside edge of left side of tongue is the most tender. I don't dare rinse with any alcohol based mouth wash (to control what I fear is bad breath), burns too much.

Still using the salt water/baking soda rinse. Haven't needed any/much oral lidocaine yet. Keeping that in reserve.

And haven't needed any oxy to be able to sleep yet.

Tony

Tony,

I developed the exact same tongue thing on the right side. It was exactly as you stated: radiation bouncing off my metal filing. I found some relief from putting that side of the tongue below below the tooth line and bottom of the mouth during treatment. Ask the techs if there is any sort of cover you can put over the filling or something as this type of burn takes a long time to heal. For example I am almost 2 weeks post treatment and it doesn't feel any better.

Regards,

-Rich

Doctor Day #3 - Well, it's official, I'm my doctors best patient, or so he said today. He looked at the throat and we discussed the side effects and he said everything is going great. Though my mouth hurts like lleh, well almost that bad, the throat is still doing pretty good. I'm having a fair amount of mucus thickening but at least it doesn't hurt to hack and spit right now. Doc said get some Mucinex and start using that, so I did.

Every once in awhile I get a little dry mouth, but keep a water bottle nearby to rewet and hydrate with. I guess if it continues I'll start using the bottles of Biotene (old formula) dry mouth rinse. Salt-soda water rinses still feel good.

The nutritionist is not happy with me, I'm losing too much weight in her opinion. Hey, I'm eating like a hog, but still losing a couple of pounds a week. She says she's happy with what I'm eating, I'm just not eating enough of it. Ice cream and cake every day, no, she wants it twice a day. Note to self, go buy more ice cream tomorrow. I had plenty of extra weight before rads started. If I continue this rate of weight loss I'll be back to a really good weight at treatment end. I'm sure many of you will fuss about this way of thinking. Even if I lost an extra pound or two per week I would still have a really nice weight. Like I said, I'm sure many of you will fuss. Okay, have at it.

Start drinking a can of Boost VHC with every meal.

Sounds mostly good Tony. The problem the weight loss from treatment is it's mostly lean muscle, not fat. I lost 110lbs, probably more, just from chemo in a few weeks. It took me several years to gain 70lbs back, but been up and down between treatments since, but I'm not even half the person I was in all regards.

14 down, 21 to go- Well, getting closer to the halfway point, that's kind of a milestone I'm shooting for.

Taste is about gone, only thing I can taste is Ensure. Even those good energy bars don't have any taste anymore ... what a bummer. Oh well, now it's just forcing food down so I dont' shrivel up and blow away.

I'm not nearly as up today as a week ago. I'm not depressed, just not my best day.

There is some good in every bad, I still have saliva, on both sides.

Going to force myself to go to dance club tonight. Maybe a little music and some moves will make the day end better.

A good weekend to everybody.

Tony

Almost to the half way point. Keep up the good work, you are doing great!

When I was going thru rads, I rediscovered Yoo-Hoo. I lost most of my sense of taste but somehow I could still taste Yoo-Hoo. It felt so soothing on my sore throat. Maybe you could give it a try. It might taste good to you.



PS... Im envious of your energy! Please use extra caution when going out in public. You can very easily pick up all kinds of things when your immune system is compromised. Let hand sanitizer be your new best friend.

Two good ideas Christine, thanks.

And the evening of dancing was just what the doctor ordered. I found out my dance club is just as supportive as my bridge club. Seems like between 1/3 and 1/2 of everyone I talked too has had cancer in some form. We will put our own Walk for the Cure team together just from the dancers.

Ambra, wishing you could've been there, you would've enjoyed it.

Tony

Hi Tony,

Very glad to hear you enjoyed an evening of dancing with your friends. Keep up the good spirits!

You have to eat, even though you can not much. Have you tried that amazing chocolate ice0cream shake recipe of Christine's? Even though you can not taste it, it has gazillion calories there are good for you.

15 down, 20 to go - Well the treatments seem to be getting easier. I guess it's because we all have the routine down. If they haven't finished preparing the room and table before my arrival I know what needs to be done, so go get the towel and lay it down on the board, go get the rubber donut for both hands to hold on too; things they now don't have to do, freeing them to do other things.

The mask fits better and better every day, I just hope they don't decide it needs tightening up. I can't move anything, but it's also not mashing deep imprints into my skin like at the beginning.

Having had this many treatments I can tell which radiation field they are on based on the position of the machine head. 5 o'clock, 4:00, 3:00, 1:30, 12:00 straight over me, 10:30, 9:00, 8:00, 7:00 and then back up to 12:00 with a table shift to get the lymphnodes between my collar blades. The lights come back on and we're done.

I suppose I'm fortunate to not have any throat burn yet, no difficulty swallowing, still have saliva though mouth dryness is also beginning to appear, the skin on each side of my neck still looks pretty much normal unlike the patient that goes before me ... poor guy he looks cooked, deep red, closer to purple, with some skin cuts/tears present at his collar line. They have had to interrupt his treatment schedule more than once, take up to a week off so I suppose he can get some relief.

I asked if I should expect that, everybody is different is all they will say and that he is getting a different treatment regimen than you. Any more would I suppose be a privacy violation. They wouldn't even tell me how far he is into his treatment regimen yet. That's okay , I'll ask him.

Still, I'd rather be in my shoes than in his.
Getting through this one day at a time.

Tony

Tony, when you talk with the patient who goes before you. Do him a favor and if he is there for OC, tell him about our forum. We can help him.

You are really holding up very well. Keep up the good work!

Tony - I have to strongly second what Christine said about telling the patient who goes before you about our OCF forum! That is exactly the way my son and I found out about OCF and I will always be eternally grateful to the young man in the Rad waiting room who whispered to me as he left for his Rad Tx "Go to the Oral Cancer Foundation.org. They can help". And we did and they helped more than words can say! So DO it!

So glad you are making your way through it you are officially at the half way point. Some people have a worse time of it. It's genetics and I am sure location of the tumor, and likely knowledge of prevention of symptoms etc..... HUGS and carry on...

16 down and another good doctor day - With the clinic being closed for Thanksgiving they decided to do doctor day early.

Long story short, doctor is still tickled with my progress. Side effect symptoms are limited to loss of all taste, a small burn on inside of my left cheek and a perpetual bad taste in mouth. That alone is enough to make you lose your appetite.

But I still have saliva both sides, no throat problems yet, can still swallow and have no radiation burns on skin of neck (Aquaphor twice a day) and wear pretty much nothing but loose fitting tee shirts.

Since treatment began I've lost 9 lbs, not as bad as I thought. Nurse gave me the heads up that when you reach 10% body weight loss that's when you get a PEG tube, so get busy and start eating more. I have 13 lbs to spare before reaching 10% (no I'm not going to try to see how close I can get to the limit). She asked me what my distress level is (0 or 1, ie no distress), fatigue level (mild, need a nap in morning and maybe in afternoon, she said fine, just don't sleep all the time), and nausea (none, though stomach seems a little gripey sometimes).

I discussed the bad taste in mouth with doctor and he said that's pretty common. As far as he is concerned I can do well from here to end of treatment on Ensure alone, but do 7 of them per day. I think that might be a plan.

Tuesday mornings I eat brekfast with the RC model airplane flying group and a friend noticed that I ate all of 2 over-easy eggs, 3 strips of bacon and two biscuits smothered in syrup. He said doesn't look like you're having any trouble eating to me.

With 4 good doctor days in a row I know this might come across to some as if I'm bragging. Don't get me wrong I'm tickled pink it's going this well. I'm just hoping others can see it's not always bad for everyone. Keeping my fingers crossed that weeks 4 through 7 don't up-end the apple cart too much.

Happy Thanksgiving everyone, I'm feeling good enough to make the drive to Dallas tomorrow to mom's house.

Tony

Tony,

Thanks for the updates. Enjoy the good times while you can. Great timing as you are likely to enjoy a feast in a couple days!

At times I feel reluctant to share experiences of getting off "easy" but on balance, we offer more hope and better outcomes for those getting started later; all is not doom and gloom.

Just a reminder, most encounter rough road after treatment wraps up. Personally, I did not get much worse post-tx and by about two weeks post or so I was, overall, about at the low point. Some side effects such as mouth sores and dry mouth hit me later but in general progress was positive pretty early. Don

Thanks Don:

I know the rough part is coming up. The doctor said today it will be about the most uncomfortable and miserable you have ever felt in your life. I don't doubt it, but I also don't fret over it.

It is what it is, it will get better, so I'll just suck it up and get through it.

Easy to say now huh.

Just before Thanksgiving another survivor (of lymphoma) gave me a heads up to using lemon drops to counter the horrible taste that seems to live in my mouth.

I picked up some and they do seem to make the problem better. These happen to be sugar free, sweetened with splenda, only ones available at the store.

Tony

Half Way Done - Finally, crossed the halfway mark this morning. 18 down, 17 to go. The holiday weekend (4 days off) was nice; the sore mouth just about healed up, which made it easier to start again this morning.

No taste for food; I can almost taste Ensure so that's the way I'll probably go until completion. I can eat other stuff, but it tastes so bad (and I mean REALLY BAD) that I just say pass, I'll stick with Ensure. It makes shopping at the grocery really easy. Trivia question - how many six packs of Ensure can you carry (no fair using a basket).

Throat doesn't hurt yet, tongue burns about healed, no skin problems on side of neck (thank you Aquaphor), sleeping well, seem to still have enough energy to want to go do things. So far I'm escaping the side effects, lets see how the last three weeks go .. finish up the day after Christmas.

Right now I would kill for a big old double meat, double cheese bacon cheeseburger and fries. Sadly, the stomach has shrunk enough that I'd likely get only 1/3 of it down.

Oh well, such is life.

T

Hi Tony, I noticed you wrote on my thread. Looks like your doing great so far. Much better than I. I have finished my RAD. 11/22/13. I couldn't eat by mouth at the halfway point and had a PEG put in. My hats off to you for going all the way without one. I was losing too much weight without it. The thrush didn't help either. Your skin seems to be handling it better too. I developed a staph infection and missed 4 days near the end. I did 35 in all. I found that so far the worst times for me were the 5th and 6th week, but it got easier from there. I hope this doesn't sound like I'm talking about me. I'm just trying to show you how much better your doing than I. Hope you keep sidestepping all those potholes. Almost 2 weeks post TX and side effects from the chemo are still haunting me. Waiting for those cheeseburgers myself. Hang in there, Take care.

Congrats on half way done Tony! From now you get to count towards smaller and smaller numbers.

I share your pain for the no taste. and you are doing so well with no throat pain and no skin problems either.

It was very nice talking to you, too. Thanks for calling!

Tony keep the thought of that cheeseburger in mind. You amaze me with the positive thoughts and good wishes you have for so many on here.

21 down, 14 to go, doctor day - Okay, chipping away at treatment one day at a time. Unless my math fails me, I'm 60% done. That fact alone will make this upcoming frozen weekend almost tolerable. We're in for 5-6 days of ice, sleet and general nastiness. Fortunately I have what looks like 50 bottles of Ensure on site.

Nurse and dietician both fussed, lost a few pounds last week, but doctor remains happy. He says the surgery site is almost completely healed and everything else looks good in the mouth and throat.

I'm luckier than I deserve because still no skin burns or throat burns. The inside of cheek burn is almost a non-event since I started using double dental rolls all around. I'm still sleeping well and have enough energy and concentration to play bridge several times a week. I still swallow easily and have some saliva, the dry mouth seems best handled by keeping a piece of Trident chewing gum (xylitol sweetened) going most all the time.

But maybe the best piece of news is on a whim I bought a can of Chicken and Stars soup at the grocery, heated it up just now and it was downright tolerable to eat. I'm sure it isn't as healthy as Ensure, but getting something hot to eat that didn't taste like cardboard was a very welcome change.

I'm sure I will find some pain and discomfort before it's over, but I'm also so thankful that it has stayed away this long.

I hope everyone has a great weekend.

Tony

Keep on truckin!

The next night I did some vegetable beef soup that also was tolerable ...

and last night eggs, bacon and toast (lots of butter and jelly)

and I could actually taste the bacon.

Woohoo.

25 down, 10 to go, doctor day - Can anybody be this lucky? Please don't think I'm gloating, but I had another good week and doctor day.

The doc says none of his patients get this far into treatment with essentially no side effects. Other than a little tenderness on outer edge of tongue (both sides) and same on inside of each cheek, I have no symptoms. The throat feels good, I can still swallow normally with no pain, I still have about half saliva. Maybe best of all is I only lost 1 pound last week; thank you about a zillion cans of Ensure. It's the only thing I can taste.

My bridge club had a Christmas party today and I was able to eat some of most everything. None of it had any taste, but I was able to get it down. At the end of the day I layed claim to that nice big meaty ham bone. When I get some taste back it's going to make a really nice pot of pinto beans. I'm looking forward to that almost as much as that cheeseburger and fries.

I know others have a rough time of it, but so far I have been lucky. Hopefully, others can be too.

Only one more doctor day to go.

Everybody, have a great weekend.

Tony

Apologize for gloating? Pleeeease...

We are all cheering for you!

30 down, 5 to go, doctor day - Well a few symptoms have finally arrived, but they haven't been bad. I have some sunburn on the left side (tumor side) of neck. I can feel it, but it isn't bad. I have some hair loss at the base of my skull on the back side; just found that out today. I have a 1/4" tongue burn blister on the left side adjacent to my molars (apparently the dental rolls aren't doing as well as desired). And I'm getting some sinus drainage that wants to dry in my throat when I sleep. Mucinex and salt/baking soda gargles and a bunch of hacking/spitting seem to take care of it. Other than that, no symptoms.

Last week was a real busy week, so I didn't get to eat nearly as much as desired, hence I lost 4 pounds. The nutritionist is ready to get rid of me because I haven't been remorseful enough in her opinion about my weight loss. But, I still have plenty of energy, I still sleep well, and I still weigh 211, so I'm not withering away by any means.

I will have one more doctor day next Thursday, before my last treatment on Friday, 27th.

Everybody, have a great weekend. I'll be going dancing.

Tony

Tony, please be very careful with your intake! I know you are doing much better than most and your weight is now at 211. believe it or not, dehydration and malnutrition can hit you like a ton of bricks. You can feel pretty good and a few hours later you feel so bad you think you may be dying. Or even overnight this can happen. It happened to me and I was hospitalized a couple times which was no fun at all. The worst part was how bad I felt. I wouldnt wish that experience on my worst enemy. So, please push yourself to take in at the very least the minimums of 2500 calories and 48oz of water daily, every single day for the next year.

Try propping yourself up on a couple pillows when you sleep and use a humidifier. This helps with the sinuses. Most sinus medicine will make you only dryer so be careful with using them.

I cant believe you have the stamina to go dancing. You are doing fantastic!!!!

32 down, 3 to go, mucositis arrived - over the weekend, and it's painful. Where the tongue burn was is now a big yellow (pus filled) blister and a bunch of smaller ones along the left side of tongue. It is very sensitive to anything warm or hot, so soup is out for awhile. Even salt water gargles hurt.

The doc said you've been lucky, most patients have this by week two of treatment.

Thank goodness for lidocaine.

Tony

P.S. Cold things like Ensure don't aggravate it, so I'm back to that.

Using the salt water/baking soda mouth rinse does help. You can cut back the amount of salt of even eliminate it if you have to. Try your best to use the rinse with some salt as it helps with healing but dont put yourself in agony to do the rinse with salt. Do what you can tolerate.

Magic mouthwash will help to numb your mouth long enough to eat/drink etc... It comes in several different formulas. Mine was lidocaine, malox and benedryl to be gargled and spit out. Some formulas are ok to swallow but be very careful as it can numb your throat causing aspiration.

Hang in there, almost finished

Oooooh sorry about the mucositis. Hopefully you will find something to soothe it and it will heal up quickly. I'm really excited that you have only have three more treatments to go. I'm counting down with you. Will you be able to get a tx the day after Christmas and be done by Friday? I've been wondering about that.

At risk of becoming the thrush guy, But everytime I had burning tongue, thrush followed shortly after. Please have it looked at, thrush sucks.

Yes, I will have treatment on Thursday and be done on Friday morning of this week.

I had the doc look at my mouth and he confirmed it was mucositis. He asked if I had lidocaine and oxy as well as chlorhexidine gluconate as those were the three best things to use. He also pushed continuiing to use the drinkable aloe vera.

thanks guys ... Merry Christmas tomorrow.

Tony

Tony, have you been drinking the aloe vera juice the whole time you have gone thru treatments? Maybe that is something that has helped you to keep the mucositis at bay for so long??? Not sure if there have been any studies done on its effectiviness, if it worked for you thats great!

Hockey Dad....I thought I was the Thrush Guy! I hear you. It is a very memorable event indeed. I have battled it hundreds of times. Most people don't know but narcotics will contribute as well.

So glad to see you really causing through this Tony. It is unbelievable.

Ed

No Christine, I was very lax in my aloe vera consumption, I probably haven't even used 1/4 of the bottle, so it probably wasn't the aloe vera that kept the mucositis away.

And I haven't used any of the oxy they gave me either, so it isn't narcotic induced. I guess I've just been lucky; the RO certainly thinks so. But, it's here now, so I didn't escape all the painful side effects. Oral lidocaine does a good job of keeping it under control.

The neck skin on left side is tender, but no open sores; thank you Aquaphor; haven't worn a shirt with a collar in 2 months.

Merry Christmas to all.

Tony

Tony, you are one amazing guy!!!! Not sure how you managed your treatments so well, but Im happy to see you are just about finished.

Maybe it was being so active that helped you get thru it easier. Having something to look forward to is always helpful.

Merry Christmas

I Am Finished -

Last doctor day yesterday, last treatment this morning. The doc has remained very happy with my results all the way through treatment. I expect it's due to the absence of most of the radiation induced side effects that I have been able to dodge.

The only painful side effect I have is moderate mucositis inflammation of the mucous tissues in the mouth. Mostly on the left side, I've had it about a week. Oral lidocaine mouth swishes 5 or so times per day have kept it under control. Doctor says it should be gone in another week, so total duration about two weeks.

Still have some sunburn on left side of neck, but no blisters or open sores. Aquaphor twice a day keeps that under control.

Still have no taste for food, hence little appetite. But doing Ensure keeps me from withering away to nothing. I ended up losing about as much weight as they would allow before wanting me to get a PEG tube. I'm not proud of that, but my belly hasn't been this flat in 10 years. I have been able to keep all my energy, needing only one nap a day on average, but more importantly being able to continue to do all the things I did before treatment. I really didn't have to stop anything. I think that is the major reason I haven't worried about the weight loss.

Taste should start returning over next 1 to 6 months. I've been told sweet typically returns first, salty second, both of those probably within next 2 months. Savory, what I'll need to enjoy that cheeseburger could take as long as 6 months. I hope they haven't been too optimistic on those numbers, if they have, oh well, cross that bridge when I get there.

Treatment went very smoothly for me. I know many of you had a rougher time of it, but it doesn't go badly for everyone. I think keeping a positive mental attitude (thank you Bart and others) and the ability to not worry about every little thing played a big role in the results. But, perhaps the most important thing is having all my friends there keeping up with how treatment was going, offering their help every step of the way and in general, just being there for me.

I owe a lot of people a big debt of gratitude. The words "thank you" don't even come close. I only hope I can help each of you at some point in the future.

In a week I will start an Immediate Post Treatment thread. Until then this thread stays open.

Thanks again

Tony

What great news Tony! It's so important you keep sharing your smooth sailing experience for others to know as they go into this that there are so many like you. Unfortunately, as life resumes they don't spend a lot of time here.

I'm so proud of you. Don't worry about time frames. You will feel things changing and adjust accordingly. Eat for nutrition now...the taste will return. Go eat that dang hamburger...well, just because.



Ed

Congrats Tony!!!!

Im so glad to hear you are finished. You have done great!

Hate to be the bearer of bad news but there are still a couple bad weeks left. For most patients the worst part is the last week of rads and first 2 or 3 weeks of recovery. Radiation is still continuing to work just like you would be going to treatments.

I still think you are one lucky guy!!! Seems to me like you went thru this fairly easily, much easier than I did. Maybe you are just tougher than I am?

Best wishes with your recovery!

Great Great Great!!! I found this site appx 2 weeks post Tx and I was compaining about my side effects and was surprised that everyone told me how GREAT I was doing, much better than them, etc but trust me you sound sooo much better than I was. Hope the next few weeks is uneventful. Re the taste I must say I think they are being waaaayyy to optimistic but let's hope their right. Just don't get concerned if your recovery takes longer than they are leadiing you to believe.

Congratulations!

Tony, Congratulations. I sit here in awe. Your bravery and positive attitude are very inspiring. Best wishes in the rest of your check-ups.

Woo hoo! Nice to know you are on the post treatment side. About your taste...well who knows. I actually started tasting things about two weeks post treatment and my taste buds were coming back strong after about a month. Of course I still have no appetite and don't exactly enjoy food, however...I can taste everything perfectly and my last day of tx was oct 14. So, you never know, your taste buds might be back sooner than you think. Look forward to hearing more about your post treatment journey. Wishing you all the best!!

Okay folks, I've started a thread in Immediate Post Treatment, so I won't be posting here anymore.