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.