New and Scared

First try to stay as calm as possible (I know, you've just been told you have cancer)....stay calm, yeah right. But this cancer is very survivable these days, and treatment doable.., not pleasant, but doable.

Chemo wasn't too bad with me, the rads are tough... More than likely you'll lose all taste and saliva somewhere after a few weeks, and more than likely not get it back for several months post treatment.

Some on here have had a PEG which is a feeding tube, the seven plus weeks of rads are tough. I didn't have one and several others didn't either, mainly like me, it wasn't prescribed. But several others swear by it and feel it was their life saver.

I am also a Vet. they're a few others here, some even still active military. Are you doing MD Anderson or some where else. just curious as you didn't mention them.

OK, now to the grit of it..

January 2009, I was in the same place as you..Dx as STGIII SCC Right Tonsil primary site and a lymphnode as a secondary on that same side. I was never a tobacco user, and it ended up being HPV+ derived which is very common these days.

The tonsils came out two days later, then I had a port inserted for induction chemo. My chemo was nine weeks in three week cycles. Cisplatin, Taxotere and 5FU. The lymphode actually dissolved away by the end of that.

I then had seven weeks of concurrent weekly chemo and 35 daily rads, similar to you, only Carboplatin.

That all ended around mid-June of 2009....I've been clean and clear since.

The first thread of this forum is called SuperThread..., it has about any information that you ever wanted to know. It was compiled by many of us here...awesome info there.

Main thing is to not surf the internet too much, most data is old, and statistics are all over the place.., it'll scare the crap out of you., so my advice, don't search too much on that stuff.

My treatment was local, so it was easy for me to drive.. I didn't have any bad days, but one thing you'll hear quick is that we are all different... some like me with minimal problems, others that had it really rough.

Eat as much and pretty much whatever you want for the moment, more than likely you won't be able tot taste some or most of those things for several months shortly after treatment begins.

Stay very well hydrated and take in calories even if you can't taste anything or it just tastes like crap.

Welcome aboard and hang on for the ride...

Many awesome people here, and a lot of long time survivors....

Best ~ John

Hi Dennis,

Glad you found this forum but not for the reasons why. I too am newly diagnosed. November 30th 2012 Tx N2b, MO Stage IV. I had a tonsillectomy and biopsies done December 21st. Fun stuff as an adult isn't it? NOT! No primary site found yet. I'm scheduled for more surgery in a couple of weeks to remove the tumor and further biopsies to look for the primary site. Treatment will be starting in March with 6-7 weeks of rads and possible weekly chemo (Cisplatin).

I can't say I'm scared really. I'm more pissed than anything else! This is a MAJOR PITA if you ask me. How dare cancer (I call it "Jack") come into my life and mess things up when things were going so well for a change. But then, I was a smoker for many, many years and I partied hardy as a youth. A good cigar and a glass of cognac were a regular occurence up until last year so I wasn't totally surprised. Still, even preparing myself to hear "you have cancer" didn't stop my heart from skipping a beat when I actually heard the words. It's a heck of a lot to digest for sure!

Even though I haven't started treatment yet, I've been hanging around on the boards asking questions and I feel like a grizzled H&N veteran having learned so much. The folks here are amazing, inspirational, encouraging and most of all real. Unlike many internet forums, this is quite different in that we share the experience of battling this beast within us. 

I scared the bejeebers out of myself by reading WAY too much. We're not statistics. We all react differently to treatment so don't get too hung up on numbers. 

As you face the prospect of treatment and the possible side effects know that you have an outlet and resting place from the storm. The only bit of advice I can give you from personal experience is to think about reaching out to friends. I'm not a military vet but I'll use the analogy of a battle. You're about to go to war and you'll need a platoon if not a small batallion fighting along side you. 

Best wishes, positive thoughts and prayers be with you...

"T"

truckin2260,

Welcome to the H&N forum.  Unfortunately, you qualify for admittance and being scared is front and center to start.  You’ve already had surgery so hopefully some of the cancer is gone and your team will use radiation and chemo to make things safe for years to come.  What ever your case is we are here to help you with information and encouragement along  the way.  One year ago this H&N forum helped pave the way for my trip to proceed without any unexpected surprises.  Keep your doctors and nurses informed with everything that is going on, they will be extremely helpful.

I wish you as smooth a trip as possible.

Matt

I am my husbands caretaker, he is the patient in thIs forum.  He was diagnosed with Stage IV left tonsil cancer (T2N2bM0) and it had metastasized to his left neck to 3 lymph nodes, 2 of which had extracapsillar involvement. After 10.5 hours of surgery, 4 weeks lhard started 30 rad treatments (66gys) and had six weekly chemo's of cisplatin and paclitaxel. He's just two weeks out of treatment and still having a rough time, but the doctors have agreed he didn't tolerate it as well as most others, but we still anticipate the treatment to be successful. That turn for the good is just around the corner.

before you know it, you'll be saying the same thing. Don't let it get to you. Take it one day at a time and share here.. You have some awesome people here, that listen well, and supportive like you've never seen... You aren't alone. And lots of warriors and survivors!

we'll be here to celebrate the ringing of the bell at the end and you'll be telling others not to be worried very soon.

welcome to the family..

Kari

Im new to this site but i was diagnosed stage IV last dec 22 (ruined my families x-mas). I can tell you that treatment can be tough at times but we all made it through.everybodies situation is a little different but there are many similarities. I had 3 courses of chemo then 35 rads. Then lymph node surgery. The chemo made me tired and things smelled like tar for a while. I lost my appetite and taste and decided to get a PEG (feeding tube) to get ready for the radiation. That caused even more fatigue and it was weird to in a confined "mask" that they formed for me to make sure they hit the target without me moving,but the radiation itself didnt hurt. At the end Its like a really bad sunburn in your throat. Pain meds and the Peg helped because swallowing was difficult, I also did accupunture for nausea. The recovery for me was hard because i had fatigue and alot of mucus...but not everyone does. About 2 months after the treatment ended i started to feel back to my old self. Its still hard to eat some things but ive gained back10 pounds with lots of ensure and muscle mass supplements in shakes. So it can be pretty rough at times but im very glad i stuck with the treatments because you come out on this side again! I was lucky that my family was around, try to have support as much as possible because little things can get hard to do if your fatigued, sick and having pain...but it will pass!

Dennis ... there are several threads discussing the benefits of using MuGard to protectively coat your oral cavity starting from the beginning of treatments.  I can tell you from experience that my son did not get any mouth sores and he used MuGard multiple times every day during the entire 7 weeks of radiation/chemo.  It is a product that has not been on the market for very long and many doctors have not yet heard of it.  The company that provides it is still trying to get insurance companies to recognize its benefits and cover the cost.  However, the company may provide it for free if your insurance won't cover it.  There is a website where you can get more information and contact information for the customer reps.  But it is important to get the MuGard ordered as soon as possible so that you can avoid mouth sores by using it beginning with your first radiation/chemo treatment.  I think the website is still mugard.com .  You can also find out more by typing MuGard into the search area on this forum.

phrannie51 said:

I used MuGard all thru radiation....

and had eccelent results (I'm sure that's why my mouth stayed in such good shape during rads).  My Dr. prescribed it for me (plus gave me two bottles).  The MuGard company called me and said it was going to be $358....when I gasped, they lowered the price to $100.  Someone else on here told me I should have gasped twice, as they got it for $50...

You can contact them directly as alligatorpointer said....someone else did that, and got it that way.

http://www.mugard.com/contact-us/

 

p

Your'e in good hands and the bottom line is you will do great!  Sorry you had to join our forum....you can read some of the bios on this site for some good info.  Be sure and look over that superthread.  You are a veteran .....you are about to go through a really tough boot camp....but when you are done you will be tougher and wiser than when you started...and you will appreciate family and life more than you thought you could   And you will be a survivor!!

Whispered a prayer as I hit post below

Keep us posted my friend...

Tim

Dennis,

So glad you found us here.  Alot of people experienced with what you will be facing.  I'm sorry but I have no experience with chemo and slight experience w//rads.  I wanted to welcome you aboard, and will be watching for future posts !   Katie