Today was Rad 12, so the best third is now behind me.

Last night, that �frog� that showed up in my throat the night after Rad 8 grew claws!

Bad night. Every twenty minutes I kept trying to drowned the �frog� with ice water. Apparently even throat �frogs� like water.

I had to pee a lot.

This morning I managed to down a cup of coffee and "wow", the throat �frog� retracted her claws. Maybe throat �frogs� don�t like caffeine!

Ya, I know she will be back tonight fortified by Rad 12!

But, for at least another day I remain out of the clutches of the throat "frog", free of the dreaded PEG, lunching on tacos and guacamole.

That is the feeling we all get I would say. The rads and chemo combo can tear your throat up and make you blink a few times. They sure kept my attention. Having lost my teeth didn't help either. I forced my self to drink the hot coffee but had to add cream for a few days to get used to it again. Maybe that frog had his relatives with him last time . If so they like to party and dance with cleats on their feet. Good luck with this stuff. They do tapdance pretty good at times. LOL

Don...

you have a female frog??
I was drinking coffee, pretty much to the end of IMRT. Although it did not taste like much. Vanilla and coffee flavor persisted the longest. Also, at the end the coffee was luke warm and had tons of half/half in it. Even so I needed lidocaine. In retrospect this was probably not all that smart!

Markus

Markus

Yup, I am pretty sure it is a she frog.
a mean and wicked one she is and I am afraid she plans to stay a while and make my life a living hell but not yet, not today.

some one suggested slippery elm tea with raw honey they told me 4 capsules of slippery elm and 4 teaspoons of raw honey in hot water take every morning before rads

So i went out and bought me some today will be drinking it tommorrow i will be my 4 th rad day and i get two rad treatments on friday

Victor,

I have never heard of "slippery elm tea capsules". Where did you go to buy them?

whole foods store gnc didnt have them it comes in powder but i was told empty 4 capsules with 4 teaspoons of raw honey and hot water

PLEASE TELL YOUR DOCS WHAT YOU ARE INTENDING TO TAKE.

Get used to the peeing because you will drink more water and liquids from now on than your body can imagine. At times post Tx I was up 4 times each night. It's better now at 2 TPN.

My frog woke me up at least six times a night during the last half of TX and would be banished only with the fizz of seltzer water. I used the cans as the big bottles lost the fizz too fast. Our recycling bin overflowed those months but nothing else really cut the mucous or soothed my throat like seltzer. Everyone is different though so it may not work for you guys, but my doctors thought it was just fine so long as it worked. Hang in there.

tom

I saw a post from Deb about her husband using a "Fentenyl Patch".

Might one of those keep the edge off thru week four?

My throat Frog was a nice lady all of yesterday so I took her over to a friends for an exceptional Indian Food dinner and she thanked me with a peaceful nights sleep.

Maybe a touch of curry in the honey elm tea brewed in Seltzer water?

Well I hope everyone has a good day

I am off to rad 13 (what an unlucky number - bad omen )

Don,
So glad Miss Froggy behaved nicely and you were able to sleep.

RE: the Fentenyl patch. Use the search feature on this board and you will see lots of posters using it in various strengths. Bill only had the lowest dosage patch and it worked reasonably well. He didn't need it right away...thinking that he started using it around week 5 as the liquid morphine worked up till then. If my memory serves me correctly, you place it on the skin and it stays there for 72 hours, then it is changed. It is pretty powerful stuff and has side effects...mental confusion, lethargy....etc...so use with caution. You usually have a script for other meds for breakthru pain while using the patch.

Glad its Friday and you have a weekend with no zapping appts...we were always grateful for the little weekend breaks from all the medical stuff.

Deb

I have to do this....

Who... (sorry) How is you Froggy?

Re patch, I never had one and relied "only" on liquid morphine/oxycodone. It is good to know that that is available too if needed. From what I recall there were some issues with dosage/side effects. (scan the board and see the above message).

Best

M

I had the patches. They go on your upper outside arm and stay there for a couple of days then you apply a fresh one. I really didn't think they were that powerful unless mine were just the weak ones. Good luck with whatever goes for you.

Don:

I have used the fentanyl patch while going thru treatment. Ask your doc about it. I started on 25mg patch and ended with 100mg. Then I was weaned back to 25mg before taken completely off. For me, the patches worked great, it was so much better at controlling pain constantly. You need to change them every 72 hours. I would highly recommend getting the patch.

Don . . . like Christine, my RO put me on the patch and built it up at the worst points and then scaled it down. Starting out with a low dosage, you may not notice the effect ( it is not a rush ) but I agree that it along with "magic mouth wash" and the other pain medications assist your body in making it through the treatment process.

William,
What is "magic mouth wash"? Several times now I have seen reference to it.

I was right that last Friday's rad 13 was a bad omen. By Saturday night my taste-buds had really gone haywire and after today's rad 14 everything I have tried to eat really tastes awful. A couple bites and I lose my appetite.

Water now has more of an "off taste", but .......

Anyway my throat frog and her muck pond are such a mess now I just manage to swallow soft foods and since they now taste so bad I guess is time to confront the dreaded PEG.

Today I got a big bottle of Lortab, smaller bottle of Viscous Lidocaine thru my MO, but he said I should check with my RO about the "patches". I will see him tomorrow.

I also picked up some Robitussin DM. Actually I am not in any pain yet except when I swallow and my mouth is still free of sores. Tomorrow ends my week three ... then four and beyond!

Don
as long as you can swallow without too much pain you probably want to keep doing it. Re taste... Even cardboard would seems to be an improvement. Try vanilla and coffee flavored milk shakes. The vanilla taste stayed around the longest for me.

M

Magic mouthwash:
these are different formulations compounded in a pharmacy.
May !! contain Maalox hence the color, Nystatin, Lidocaine, antihistamines, glucocorticoids etc.

I had a bottle too, it burned like hell and I finally threw it away. In retrospect I guess mine did not contain lidocaine.

Don-
Have you checked for thrush? Early on in my treatment I got really discouraged because everything tasted gross, water was the worst - it was just "off" tasting." Turns out it was thrush and I got that cleared up right away and it was amazing how much better everything tasted! I still had my tastebuds after all! Now that I'm done I'm battling the mouth ulcers and the mucus (they hit full force at the end of week 6), but that's a whole different story. I have the Magic Mouthwash as well with the lidocaine but it is not so magic and I rarely use it - and it does burn until the lidocaine kicks in and then it burns again as the lidocaine is wearing off, at least for me. I stick to my Lortab and Morphine - they seem to do the trick for the pain. And definitely keep swallowing!!! I can't "eat" anything right now because of the ulcers but I try to drink as much water as I can every day to keep my throat open.

Don:

My magic mouthwash was a mix of malox, lidocain and benadril. There are alot of different combos, mine I used several times a day to numb my mouth so I was able to drink. The nystatin is what burns your mouth, I had that for thrush.

Keep swallowing water even if it tastes bad and burns your mouth. It will help you down the road so you dont have to relearn how to swallow.

I know how much you hate the peg tube. It sounds like right now its about to become your friend. Hopefully you have practiced using it so you are able to know which way you tolerate the formula feedings and if you can tolerate the formula. I had a hard time with the gravity method and also pushing it thru with a syringe. I had to get the feeding pump and use it overnight, which wasnt so bad. It also took me several formulas before I found one that I was ok with.

The fentanyl patch will take about 24 hours to kick in. It will make this so much easier if you dont have to constantly think about when to take your pain meds. You may still need to take alitle for break thru pain occassionally. I use hydrocodone which I think is generic lortab, its liquid and goes thru the peg tube. Dont forget Robotussin can go thru the peg tube too.

Hang in there you are about half way finished.

Don,

Also swallow the Carnation IB VHC which has 560 calories in a small 8 oz can. I didn't have the Peg and believe me I wanted to swallow the least amount I could to get the recommended 2000 cals per day so I only had to deal with 4 cans a day. Looking back I wish I would have been told to down 3000 cals a day because 2000 just didn't cut the calories my body needed to maintain itself while being tortured.

Well today was Rad 16. The start of weeks four.
Stephanie was right. I have the Thrush.

I think one of my RO's at first thought I was getting carried away with Internet diagnosis, but when she looked it was the Thrush! Then she remembered that I had antibiotics before RT and said it is quite common when a patient has been on antibiotics.

She prescribed Nystatin and when I picked it up the pharmacy lady told me it tasted awful (as if I had any taste buds left).
Anyway just telling me it tastes awful is enough to freak me out. So yesterday the Nystatin stayed on the shelf, but today my Dietitian asked if I had taken it and she laid down the law.
Also she got on my case about not using enough Nutren since now I am not eating enough.

When I got home I took the Nystatin (then a can of Nutren). Actually I thought the Nystatin tasted quite good!

Maybe like Stephanie said, the Nystatin will kill the Thrush and re-incarnate a few taste buds and I can keep eating food for a while longer (avoiding the PEG)

My lady frog and her muck pond is now a back-burner issue. It is now all a matter of taste. Mouth remains fine, free of sores (just a few little bumps)dry mouth at night. Throat is a bit sore but I can still swallow soft stuff and I am not in any pain, but sometimes I do feel like I have been thrown under a bus

Checked on the pain patches and the RO said they can have side effects and she only uses them when Lortab and similar meds are not working. Of course right now I don't really have any pain.

The first round with Nystatin for my thrush I gagged everytime I took it and threw up a few other times from the taste. But I threw up at the drop of a hat at that time anyway (I was on a formula that was not settling well in my stomach and kept making me sick) The good news is, I definitely got some of my taste back after a few days on the stuff! I'm so glad it's something fixable for you and now hopefully you will get some of your taste buds back! But now you'll have to watch out that you don't get it again. I got it again later in radiation, but I knew what it was and what to do that time.

Hi Stephanie,
I am actually not sure what the Thrush is. Yeasty mucky yuck I think, so I will be sure to have my RO double check next week.

Hate to say it but the Nystatin is the best thing I have tasted all day! My taste buds must really be messed up

Now that you are a week out of treatment, how are things going?

Yeah, thrush is a build up of yeast. For me I got a build up of white stuff on my gums that would come off if I rubbed my finger over it. I got it from using mouthwash compulsively. You can also get it from eating too much sugar and also from the antibiotics as well! That's my two cent explanation. I'm sure Wikipedia does a much better job!

Thrush...a wonderful side affect of treatment for so many things.
To diagnose thrush, candida albicans, a swab of the offending whitish area must be taken and observed under a microscope. Thrush is an opportunistic part of the oral flora that will establish itself in the abscense of normal flora or where oral tissues are or have been compromised/injured and are going through normal healing or an antibiotic has compromised the normal microbiological flora. Once it establishes itself it will spread over other oral tissues.
Thrush is not pretty or pleasant and must be treated. An area in your mouth that appears whitish and you can wipe off, then recurs looking the same within 12 or so hours after is most likely thrush.
Talk to your docs as soon as you suspect thrush. There are simple solutions to combat this problem. Oral anti-fungals such as Diflucan (one dose) can eliminate it. Oral rinses with nystatin suspension are also effective.
My point, get it diagnosed and then get rid of it.
If anyone has questions let me know.
Cheers,
Mike

As with many of the question here, the main OCF site has the basic info that you need to understand this. http://www.oralcancerfoundation.org/dental/candida.htm

By the by, while we have discussed this before about Wikipedia, I state it here one more time. Go to any page you like in the site, sign into Wiki, then put on that page that the moon is made of green cheese. What you will see is that it is accepted and the page is changed. Oh for sure, at some point down the road a monitor will read the page or a bot will check and hopefully fix your changes.... but how may people will read it before it's corrected? As a place to get some starting ideas OK. Definitive answers, I think less so.

Their oral cancer page, I have changed a gazillion times, and sure as shit someone goes in, that has outdated info, and changes my changes to something else.... I would not trust serious inquiry to this source.

Yes, I do know that anyone can change whatever they want to on the site, whenever they want, to whatever they want. It was more as a joke than anything else, showing my limited knowledge on the subject and that it would be best to look elsewhere to find a more thorough explanation if one was needed! I do apologize if I stepped on any toes!

Nothing to apologize for, no toes stepped on. But the web is chock full of bad info. Since you were new here, I did not mean to challenge your fact finding, or you personally, I just wanted to make you aware of something that has come up before.

Okay! Thanks for the info! It always pops up first on a google search so I usually use it as a starting point and then proceed spending the rest of the night checking other websites for information. You would think I would wait until morning and just call my doctor. But oooooh that would be too easy!!!

I was not trying to pump "Wikipedia" if that was what everyone took from my post.
Sorry if it was.
Just trying to relay my personal information.
Mike

Will everyone quit apologizing for things they do not need to!!!! You guys have been to to many sensitivity training courses!

Okey Dokey.
Anyone going to he Olympics?

Absolutly,
Brian had been too busy to post so it is not well known that OCF is fielding a team for the Olympics as the 1st international OCF fund raiser. It's not too late to sign up.
The open slots and qualifications are:
Javelin throw and shot put: Bilateral ND
Broad jump: Fibila free flap
Dive team: Previous HBO experience
50 yd dash: Experience with super hydration

Entrants must pay own expenses and have at least 10 sponsors at $50US or 200 Euros each. Currency from any country is acceptable at the current foreign exchange rate plus .045%.

Malka
Great sense of humor!!!!!

Too funny.... we should put out a dummy press release, I bet we can think of additional events.

Just as long as we don't have the long SPIT contest. LOL I think about 1/16th of an inch could win that one with all of our dry mouths. No tatse test yet either LOL Man I love it when all are relaxed and having fun in here.

I dunno, Jim! I think for those of use still in treatment, with an over abundance of "secretions" there could be some serious spitting going on!

Yeah, I'd be willing to put my mucus in the competition!!! It could go on for miles!!!

My husband had rad # 6 today as well as a PEG tube placed.
His throat still feels fine, and he is very hopeful that the rad will not effect him like so many others that have posted here.
If its going to get bad, when should he get wary? He is scheduled for 32 treatment, and they are treating both sides of the neck, as well as the front. The cancer has spread from the orthopharynx to the lymphnodes on both sides of the neck.

It affects everyone differently. There are people that have problems from day one and then I didn't have problems until the last week. It just depends. I think on average, it starts bothering people around the 3rd week? But I would be prepared for any time.

That is so true Stephanie

Rob received the old fashioned rads to both sides and the front,and he was in trouble within a few days.His mind set was work all day,have his treatment late afternoon,rest for a while and back at it the next day.I think he managed to work for 4 days,and he managed to eat for one.It took us by surprise as we were ready for the three week wall ,but hadnt taken in to account his pale skin and red hair which didnt take kindly to being zapped .

liz

We would have to have 2 competition categories: 1. Not Finished Tx Yet and 2. Post TX. There are other Categories we could have like:

Most water consumed in a day;

Least time to shave without a beard - male;

Most Gum chewed in a day;

Most time daily spent talking about cancer - non medical professional.

I get the mucous, just can't get it to come out. LOL That would be some tough spitting or should i say dribbling down the chin if lucky.

The "Drug" testing standards would have to be tweaked a lil bit though. God knows what cocktails some of you could fire down them Peg tubes. LOL