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New and Scared

truckin2260
Posts: 3
Joined: Jan 2013

Hi all my name is Dennis and I found out that I had throat cancer on the 2nd of jan 2013. Since then I have had surgery to remove my Right tonsil at the VA Hospital in Houston. If any one could give me a Idea of hat the Chemo treatment will be like please let me know.  The oncology doctor I saw said he was going to do Cisplatin along with 6-7 weeks of Radiation therapy.  Due to the distance involved I am gonna be doing this mostly by myself but talking with my family at nights. On the weekends one of my daughters will be coming to pick me up and bring me home as long as I feel well enought to travel and if not she will stay with me for the time she can.  I am a Military veteran and still am at a loss to this and to be honest scared out of my wits facing this. 

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

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

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to the place where nobody wants to be a member of. First off let me say this, relax! Try not to be so fearful. There are soooo many successful cases on this site. Treatment for H&N cancer has come a long way.
As far as chemo, I did not have Cisplatin but many others did and they can tell you all about it. I had Erbitux.
Radiation is another story. I along with many many others have been thru that and can help you there. Radiation will be pretty uneventful for a couple to 3 weeks at which point you will become pretty fatigued and probably start getting some mouth sores. By this time you may have lost your sense of taste or at the very least your taste will be changing. There are meds that help with the pain. In my case I was also very nauseas from the rads(radiation) and there are meds for that too. Towards maybe the 4th or 5th week you will most likey notice some skin changes on your neck. Most of us end up with what is like a very bad sunburn. There are creams for that too. That will heal pretty quickly after treatment ends. I'm about 7 months out from treatment and my taste has returned about 85%. some people get their taste back quicker and some take longer.
Not sure if your oncologist mentioned it or not but eating becomes very difficult and so many of us end up with a feeding tube, or what is called a PEG or Gtube. I had one and that's a peice of cake. The procedure is quick and you will given detailed instructions on how to use the tube for nourishment and even hydration as this too can be an issue.
As far as you being away from your family during the week, that may get a little difficult towards the end of treatment when you may have virtually no energy. I remember just trying to get dressed and brush my teeth to go to rads was such a chore. I was lucky in that I had a group of friends and my husband to take turns driving me to my appointments. It may be easier if during that time someone can be with you.
I dont want to put you on overload right now but we are all here to help you.
Again, welcome and get ready for lots of input and advice! You will find that this site is a very tight nit family and you are never without and ear or shoulder!
Billie

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

to the club nobody wants to join.  You've found a GREAT resource in this forum, tho....and I'm so glad you found it before you start treatments.  Like Billie and John said....treatment isn't much fun, but it's certainly doable.  I was scared to death when I got here, and the folks here filled me with confidence that I could get thru this and survive....I did!

I didn't have much trouble with the Cisplatin (some nausea, but it was taken care of by the meds the Dr. gave me)....radiation will tire you out, give you a good sunburn on your neck, and burn the inside of your throat and mouth....that's why many of us had PEG tubes (a feeding tube that goes directly into your stomach).  I got mine before I started treatment due to already being underweight.  Different Dr.'s have different theories about using them.  Mine saved my butt in the last three months of treatment.  I had only a little trouble using my mouth for eating during radiation and chemo...but I had 3 months of Cisplatin and 5FU after radiation, which did my mouth in. 

You might as well start getting some things on hand for when you start treatment....it's far easier to have stuff around than to have to go get it, when you don't feel very well.  Lotions and potions for your neck (I used Calendula cream as per my radiologist), it was very healing, and kept my neck moist without being greased up like a pig at the fair.  I also used Aloe 99.  I was glad I'd bought a case of Ensure/Boost before I started, so when my throat did start to hurt I didn't have to go buy any. 

It is scary on your end of the tunnel....but I can assure you, you WILL get thru this....come out the other side, and go on with your life.  It is a bump in the road...truly!!

p

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

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"

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

Don't be doing too much research on the internet....it will scare you....it sure did me.  What you're reading may be outdated, or simply untrue....stick with the folks that have been thru it!!

p

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

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

ditto1
Posts: 634
Joined: Mar 2012

Hey Truckin, I to want you to know this is doable, I was diagnosed in March 2012 and had Base of Tongue cancer Stage IV with lympnode involvment..  33 RADS 2 Cisplatin 9 Erbitux, no Peg.  Its not an easy journey and I will not repeat what the others have already advised you of since its likely to play out, but  this time next year you will be posting to the next newbie that needs advice and you to will be able to say hey its DOABLE.  Good luck and your in many prayers.  Some on this post had to do their treatments far from home, one great gentlemen Tim 6003 had to stay in a trailer on the grounds of the Hospital 100 miles from his family, and Im sure he will respond to you when he sees your post and can assure you he can relate.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

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

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

welcome Dennis, not the best place to have to meet. but with what you have it is the best of the best. 

being scared is very much the normal reaction. it's ok to be scared, now that being scared has been completed it is time to get tuff and fight like a warrior. Being a veteran will help carry you while you fight like hell to continue being a survivor. Surviving is the norm, but the fight is still as tuff as it is going to get. it's your war to win and your caregivers, family, friends and all us here at CSN are here to help you thru every daily battle. 

Never, Never, Never Give Up!

john 

Dr.Ed
Posts: 22
Joined: Jan 2013

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!

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

You are now in the club nobody wants to be in so you may as well join in, listen and read, ask questions and you WILL get good and precise information from those who now live a cancer survivor life and encounter most of what you are thinking so just read and ask. Don

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

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's picture
phrannie51
Posts: 3849
Joined: Mar 2012

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

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

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

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

It's understandable to be scared of the unknown. I was very fortunate to live within walking distance of where I had my chemo/rads...not that I walked there. It just adds to the anxiety being out of town and away from family. As said above, the rad tx itself does not hurt and only takes about 10 minutes a day. It's the side effects that can get you down and a person doesn't know which side effects they will get until it happens. I did allot of sleeping and had to force myself to get up and eat or use the g-tube. Even at that, I lost 60 pounds. Plump yourself up before you start and throughout remember hydration and nutrition are the keys to an easier time. I hope your journey is an easy one.

Candi

katenorwood
Posts: 1862
Joined: May 2012

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

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