Ok so it is set I will be starting my radiation treatment on July 1st, got fitted for my mask and they gave me a box of cephasol with a script which I dropped off but of course nobody has in stock. From what I hear that stuff is very expensive and ulcerease works just as well about a quarter of the price? Anybody else experience that or hear that? I also picked up my fluoride trays and they cracked me $18 per tub of pro-den RX 1.1%......Not only is the torture to go thru you go broke as well!!! lol, anyways I have 33 treatments left neck and tongue. I have elected not to have the concurrent chemo and passed on the PEG tube also....I will keep you all informed on this journey of hell! Oh yea I will also be working thru the first 3 weeks....well attempting to anyways. My position (finance manager for a nissan dealership) requires 10 hr days and a TON of talking! Not to mention I dont know how well the Boss is going to like me not being able to shave for 3 weeks especially being italian....lol

Good luck. It is a journey unlike any you've ever taken before, I can assure you that. Keep a good positive attitude and look at it as one day at a time and before you know, you'll be looking at your last six treatments as I am. I liked the part about being broke you made me laugh, SO true what with scripts, Dr co-pays, etc.
Well listen, keep posting on here, it surely helped me with what to expect and what to ask[tell] my medical team.
Good luck on going without a peg. Talk to you soon!

Speaking of shaving. I had all my whiskers fall out like little grains of black sand towards the latter stages of radiation. I didn't have to shave for weeks but slowly the whiskers above my chin line returned and heavier and darker at first and then they became normal. To this day I still don't have whiskers below my chin line and that remains THE ONLY positive side effect of radiation. You will also loose the hair on the back of your neck where the radiation blows out out but it will slowly return.

I see your new signature line...oh sure Moffitt gets credit for changing your mind after one visit telling you the same thing I beat into you over 20 different posts!! CPA Cancer Advisors just don't get any respect.

Jim, best of luck with your upcoming treatments. If you need some assistance with your prescription costs, contact the american cancer society. They may help you by setting up something with your pharmacy. They gave me $300 to help cover my prescriptions.

So I went to walgreens today to pick up the Cephasol that my RO prescribed me yesterday and they gave me 4 bottles of Mouth Kote?? Charged me $53 with my INS card! I just went to www.dentist.com and found the same stuff on the website for $10 a bottle! Jackasses! Anyways has anyone used this stuff or used the Cephasol? Do you know what the difference is? I am going to call my RO tomorrow and find out if I should return this to walgreens! Thanks

Jim,

Good luck and don't forget to give David a pat on the back or he may have to go for counseling.

Jerry

Jim:
Good luck with your treatment. Please keep posting here as you progress. It really helps to boost your moral while you're going through this treatment.

Sandyst

Jim,

Also look into Cypress SF 1.1% Sodium Fluoride Gel. It only costs me $8 for the same 2 oz tube and since you will probably be using these trays for the rest of your life, it will save you tons. I haven't looked online to see if I can get it cheaper yet.

My sister will also be beginning radiation next week. how long does it take for these mouth sores to develop??

Courtney,
Mouth sores are also somewhat dependent on what chemotherapy protocol she will be getting (if at all). Cisplatin is notorius for mouth sores. Not so sure about Carboplatin or Taxol.

To answer your question it took me about 3 weeks before the mouth sores got started. They persisted for quite a while post Tx as well. It is also easy to confuse them with thrush wihich is another side effect of xerostomia (dry mouth).

There is nothing to "figure out" - Stage IV (T3N2M0), radiation IS needed. Please refer to the NCCN Oncology Practice Guidelines on the main pages of the site.

My sores didn't develop until my 4th week and that's when everything started to go south for me. Surprisingly the sores weren't all that bad for me. The nausea was my nemesis which brought along a lot of "friends" like Mr Dehydration and Mr Constipation.

LOL! Well I am stock piling for war! I have gotten soooo much stuff to try and battle this treatment I dont even know what to use and what not too....I'm sure everyone is different and some of this stuff might help and most of it probably wont. I have cephasol, mouthkote, ulcerease, biotene dry mouth toothpaste and biotene moisturizing gel, a damn case of fluoride gel, bought a braun series 7 electric razor (thing is great) and like 5 super soft brissle toothbrushes! Of course going to use all the natural stuff too, like this huge ass aloe plant I recently inherited and simple saline mixture. Am i missing anything??? lol, let me know? Oh yea I have 2 cases of Gatorade G2 and 2 cases of Boost Plus!!! Haha, It is nice to be married to someone that works in a ENT office, I get on the manufactures website and her doctor plugs in his info and they ship the stuff either wholesale or free samples! If anyone is getting shafted on there fluoride gel let me know! I got cracked $18 for 1 2oz tube and just ordered a case of it from www.carsondental.com (of course you need to be a physician) for $150 (24 tubes) I'm not making my dentists benz payment....well maybe I am......

That's really cheap. What fluoride brand is that? How do you look it up on the left hand menu, i.e. what category?

You should have gotten the CIB VHC instead of the Boost Plus. VHC has 200 more calories in the same size can and SIZE WILL MATTER later on. lol

One more thing, don't get caught up in the "I like the way that tastes today so honey go out and buy a case of it" fever because as you progress in your Tx everything that tastes OK today will taste like crap tomorrow. I kid you not.

Yea you mentioned that before and I looked at walgreens and Bjs but couldnt find it. This boost plus (I have no idea what it tastes like) had the most calories of any I looked at. I will look for that a cvs and publix again. Its carnation instant breakfast right? As far as the fluoride goes you look on the left side under preventitive and you will see fluoride click on that and you will see it. They have a couple different ones.

Ok so not that you need it anymore but I just found CIB VHC on amazon for $26 a case! I bought 2 cases you are right it is lactose free and carries 560 cals in 8oz! Perfect! So I should have enough of that stuff! When did you start having to slug those down and how long was that the only thing you could eat last? I figure I need to put down 4 of those a day correct along with 60-80 oz of gatorade or water! I am sure I will not want to look at a meal in a can for a long time after this! lol

I hope you buck the odds and make it well into the tx before issues arise. Rest assured, you can ask any question here during your journey and someone will likely have experienced it.
Good luck.

My mom just finished her chemo last week and her last radiation tx. was Tuesday. I can't believe they waited so long to give it to her, but they JUST gave her the Calphasol last week. They gave her a month's worth in a starter kit but she said it was $700+ for a month's supply. She says it works very well for her mouth pain but she isn't going to pay that for it. Yes, it will be a long time before you will want to drink your meals after this. But they're right... drink away for nutrition and prevention of the bad guys - dehydration and constipation. Mom had problems with all of this. She has a hard time getting in all she's supposed to. Take care--I'm sending good wishes your way!

BE POSITIVE, Nancy T

Jim,

You really should do 6 cans a day and just figure on those 2 cases as a baby starter kit. I drank VHC for over a year post Tx. At first exclusively for survival, then gradually I morphed into a can with each meal mixed half and half with whole milk to make sure I was getting my 3000 cals a day. Even with that I didn't gain a pound my first year of recovery. The recovery will take a lot of calories you won't even realize are being consumed. Also I eventually had to drink everything room temp so watch for cold sensitivity.

Check with your nutritionist as I'm not sure if Gatorade is a straight 1 for 1 substitute for water. Besides Gatorade tasted like crap about 5 weeks into Tx and stayed that way for months post Tx.

Your mind will be very unkind to you during Tx. When you start to loose your taste but you are still able to eat, you will picture your favorite type of pizza or something and mentally you will taste it perfectly so you will get one and then reality will hit you over the head as you bite into it as you scream "WHAT THE HELL IS THIS?"!! Very cruel until you are able to fight off that mental taste thing.

David I can always rely on you to give me all the positive news! lol! They told me to drink as much gatorade G2 (less sugar) as I can drink along with water. Even told me to drink pedialyte since it has even less sugar and more electolytes! Well I am hopefully not going to have to start drinking my meals till at least week 4-5 especially since I am not taking the PEG. I have gained 17 lbs in the past month! Tell me I cant put on the lbs! lol!

Good Luck Jim, I'm pulling for you buddy. The boost plus chocolate didn't taste bad but was hard to get by my pharmacy so switched to Ensure Plus. Still less calories then the VHC but not bad substitute.

Keep your chin and spirits Up!

Eric

Porker!!

That's good, you most likely will need it or you could be one of those that won't loose any weight and end up morbidly obese post Tx but I won't go there. lol

Seriously though do try and get the answer to the water vs Gatorade question as I see them mutually exclusive and water intake will be important to your Tx and if it comes down to whether I drink water or Gatorade because it hurts to much to do both, you need to know.

Ha, Yea when my RO told me "eat up" I have definitely done that! I spoke to him today and he said water but when it gets tough to put down 8-10 glasses a day mix in the gatorade for the extra boost! I am hoping to be able to put down solid food at least to week 4. I dont know the exact amount of pain but I do know that it hurt like hell with my tongue surgery to eat and with my neck dissection but I managed. With my tongue it wasnt so much my throat even though everytime I swallowed my tongue would THROB since I had the surgery on the back side of it! I am almost envisioning it feeling like it does when you wake up from surgery after the breating tube has been shoved down your throat for 3 hours except that pain goes away in a day this is going to be ongoing for a month or so! Who knows! My RO told me that he has a 72 year old woman right now on her last week (7 weeks) and she hasnt missed a beat! Said she isnt really having any problems at all that she cant handle.....then on the other side he has a 46 year old that acted like this wasnt going to phase him and he was going to work the entire time he was having treatment......well you know how that story goes! He was in the office crying and whining after week 3 and by week 4 done working! Sooooooo we just wait and see! I have my 1st softball game Sept 20th so I better be good by then....lol!

At best you will probably be the Bat Boy. lol

The problem we all seem to encounter is that in the early stages of the rad, we can swallow but shortly the food tastes bitter which takes away all the pleasure we derive from eating so it's not that we can't eat solid food, we just don't want to.

I try to tell people all the things that may happen so they won't be mentally caught off guard if they do. If they don't happen, then all is well either way. Granted some say they don't want to know anything but that's not me. By the time I finish with you, nothing will phase you and you will breeze right through it.

Hey David, LOL then why can't I eat solid foods? I still take between 8 and 12 liters of water plus at least 6 coffees daily and try for 2 glasses of milk too.We are all different and my Drs say that I am the only one that tells them to go for whatever ut is they have to do. I get ask why I don't complain or comer in all teary eyed LOL I just ask if that would make them feel better? Nope. Not at all just remain the Jim with the good attitude.

Jim,

I stopped trying to figure you out after your 40th procedure!!!

LOL...I think EZJ falls into a different percentile group than the 3 you listed. So does that mean the total on this board now equals 121%? (you know, I found that post so funny I can't seem to let it go...hope you know I am laughing with you not at you. :-))

Jim, what position do you play for your softball team. I've been reading a few posts of people who are having an easier time with RT than David is preparing you for...so have faith! Like your doc said, could go either way.

I think the older the patient, the more closely they listen to the docs...where the younger ones (my husband at 48 was considered to be in that group at the time) think they are invincible and then they are knocked on their asses unexpectedly midway through treatment. So, here's hoping you sail through like the 72 year old woman your doctor is treating. :-)

As David is helping you do...prepare for the worst...hope for the best. Every one has a different experience on this crazy treatment path.

Margaret. I'm 73 . Should I listen to them now?? LOL

3 down 30 to go! Gotta say being strapped down with a gag in your mouth and the mask clipped to the table is extremely difficult for me! The 1st treatment I was like that for 30 mins I started to literally lose my mind! I need to take a damn valum before I go to my treatment. Everyone else have the mouth gag too?

My RO ordered me to eat Hagan Daz every day because I lost so much weight. So much for low fat and sugar.

There is no such thing as a "damn Valium" - only "damn good Valium". I took Zanax when I was going through Tx.

It'll get easier I promise - at least the mask part anyway.

That's true about the mask part getting easier. My mom had such a problem with the mask the first time around. It was terrible. She just finished her radiation and chemo this time and went through it like a pro with the mask part.