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looking for answers to SCC stageIII in the tonsils

catfish_58's picture
catfish_58
Posts: 71
Joined: Feb 2013

Was just wondering about what to expect.I'm A First timer, have been diagnosed with SCC stage III and HPV+ I am a smoker but recently gave that up over a month ago.the cancer is in my left tonsil and have a mass on the side of my neck below the ear.Doctors want to do 33 treatments of radiation and 6 to 7 treatments of chemo.Am in my 50's and never have been sick with the minor exceptions of a cold or flu.Any suggestions on what to get to prepare for the sore throat and whatever comes with this would greatly be appreciated.thanks

Skiffin16's picture
Skiffin16
Posts: 8024
Joined: Sep 2009

One of my favorite phrases while in treatment...

"I'm in perfect health, other than having cancer"

Welcome Catfish..

Read the SuperThread for starters, most everything you ask is covered in there one place or another.

As you know I was STGIII SCC HPV+Tonsil Cancer and a lymphnode ..

more than likely your MD's will hook you up with pretty much anything you need/require. But there are a few things on here that have worked for some, and some that haven't.

Most of what you'll go through nobody knows at this point as we are all different, respond, heal and recover differently.

Some thing that I can tell you...stay very, very well hydrated, that's one of the biggies. You may or may not have a PEG (feeding tube), some like myself didn't and made it through just fine. Others swear by it, and say they wouldn't have survived with out it.

Let you MD's be the deciding factor on that...

Calorie intake is another..., one way or another you have to get calories into you..soft foods, high calorie drinks like Endure or Boost.., PEG..whatever it takes... hydration and calories.

The other stuff will be addressed as you start treatment and if you have issues.

Again...welcome

~John

phrannie51's picture
phrannie51
Posts: 3415
Joined: Mar 2012

nobody wants to join.  However, you have found the perfect place to pose your questions and get the straight poop on things.  Dr.'s are great, but when it comes to the practical stuff...the daily living with radiation treatments and chemo, they haven't been thru it....the folks here have. 

I had NPC, with a mass on the side of my neck....had 35 rads and 6 chemo treatments....this was last April, and I have been back to work since mid-October. 

Before you get started on treatment, you might want to stop at the health food store and stock up on a few things....Calendula cream and Aloe 99 for your neck (it can get a bit crispy with the rads)....and some L-glutamine to mix with water for any mouth sores that may occur.  You might also want to talk to your Rad Dr. or your Oncologist about getting MuGard before you start radiation.  It is a mouth sore preventative.....it helped many people here , including me (if they poo poo you, insist on getting it). 

As John said....hydration, hydration, hydration....and nutrition, nutrition...nutrition....these are so so important during treatment.  He mentioned "Endure"...LOL....it's actually "Ensure"....however, after drinking it myself for many months, Endure is a better name for it....we should write the company...Laughing 

I was one who got the tube put in before I ever started treatments....didn't use it at all during radiation, but once the adjuvant chemo started my mouth took a beating, and I was SO glad I had it.  If they give you your choice, think long and hard before saying no....it's minor surgery to put it in, and no biggie to get it out....if you never use it...good for you.  If you end up needing it, you don't have to get it placed when you're already getting beat up from every angle. 

It's gonna be ok!!!  I was scared to death when I got here last year, and was assured that though treatment is tough, it's more than doable....it is true.  We have another member here who says "you're going to make it through this, so get used to the idea"....you start getting used to that idea!!  If you hang out here long enough, you'll see that this is just a bump in the road....not the end of the road.

p

CivilMatt's picture
CivilMatt
Posts: 2649
Joined: May 2012

Hi Catfish,

 

Welcome to the H&N forum and I am most sorry you qualify.

 

I am feeling lazy today, every thing Skiffin and P51 said, it is all in the Superthread (nausea, pain, constipation, sore throat, mouth and tongue, etc). 

 

Keep your team informed about every side effect you feel, they will more than likely have some thing for it.  Come here for straight answers with nothing off limits.

 

Keep drinking water and swallowing, it is cheap and the payback is enormous.

 

You will do fine, I was scared at first, but it got easier.

 

Matt

PapaPaul's picture
PapaPaul
Posts: 31
Joined: Jan 2013

That no one wants to be in but none of us would want to be without! Although we are all different and we react differently to the treatments, we have all have similar experiences to yours. I was dx with SCC of the left tonsil with node involvement (stage IVA due to tumor size).  I am just into my third week of treatment and have already had several of the chemo/radiation side effects that have been mentioned in here. My worst was with dehydration, so please listen when folks say "hydrate, hydrate, hydrate"! This has to be the worst feeling I have ever had!  I ended up in the on IV fluids for 4 hours just to rehydrate and then missed one chemo tx. I will also echo what the others have said....This is doable and you can do it. Just hang in there and follow drs instructions and lean heavily on your support team.

 

PapaPaul and Groovy Grammy

Isign4Him
Posts: 34
Joined: Jul 2012

Hi, sorry you had to become a member of this fraternity, but now that you are you will have plenty of prayers, support, suggestions and answers to some of your questions. I was diagnosed with scc of the left tonsil stage IV. The first thing I did was have a PORT placed and the 2nd was a MIC-KEY button, much better than a PEG IMHO. Both choices were great ones. The MIC_KEY kept me alive as I couldnt eat for 2 and 1/2 months. I am 7 weeks out of treatment and still depending on the MIC-KEY for the most part, but I am starting to eat and Ive been drinking tons of water since my first week out of TX. Hang in there think positive and dont be afraid to ask questions and for help. This is a great place to be a part of and lots of nice folks to help and support you as well as pray for you.

In Christ, Kevin

jcortney's picture
jcortney
Posts: 371
Joined: Sep 2012

Hydrate?  You just would not believe how many troubles, that are unnecessary, you will have if you don't keep up the fluids.  I am three week out of treatment (3 rounds of Induction Chemo followed by 30 (60 grey) RADS for SCC BOT Stage IV because of lymph involvement). I had a really rough time two weeks into Chemo because I didn't take the hydration suggestion seriously enough.

Don't be a stranger, this is the place to ask questions and get quick, accurate answers from folks that have been where you are traveling.  It's a tough road, but one you will be able to handle.  I did, but would have been 10 times harder without the help I got here.

Good Luck,

Joe Cortney

Dallas, TX

Laralyn's picture
Laralyn
Posts: 406
Joined: Apr 2012

Welcome to the club no one wants to join. :-)

I had SCC HPV+ left tonsil too, with some soft palate involvement. I also had a swollen gland below my left jaw. And my treatment plan included the lower dose, weekly Cisplatin rather than three large doses. 

Ask your doctor about Mugard--it can make a big difference in terms of mouth sores from radiation and chemo. If your insurance won't cover it, the Mugard website (www.mugard.com) has a form your doctor can fax in and they will often give the medication for a large discount (or free, in my case). 

Don't hesitate to post questions here as you go through treatments, but also don't hesitate to communicate with your doctors. Sometimes insurance policies can mean you get the minimum medications that are effective, and if they aren't completely effective for you, doctors can note that and step up the treatment. For example, I didn't receive Emend my first chemo session, and I ended up pretty nauseus afterward. I told my doctors, and they were able to give me Emend the second chemo session because the drugs used in the first weren't completely effective.

Hydration and nutrition are super important. Even if you can afford to lose weight normally, you have to be diligent during treatment. I was significantly overweight, and I'd never had so many doctors tell me to stop losing weight! Treat nutrition and hydration like medicine. Schedule them and do what it takes to get them on schedule, whether it's via mouth or via tube. If food stops tasting good, go for whatever is the fastest, most dense and easiest way to get the calories in. 

It can help to have a daily checklist or even to program it into your phone or email calendar so you get reminders. As you start to feel more under the weather, time becomes a blur. You'll sleep through times when you should eat or take medicine, or zone out watching TV and discover you're two bottles short on water for the day. I don't usually need those kind of reminders but they were really helpful during treatments.

Beyond that, just focus on waiting it out. That's all you need to do, and really all you can do besides keeping up with medication, nutrition and hydration. Like I said, don't hesitate to ask us questions and check in with us! We're all here to help.

HobbsDoggy
Posts: 165
Joined: Feb 2013

For me the worst thing is that I was not really prepared for how tired I would be and how much help I would need.  I had never been sick too much before and so figured I would just be tough and brave.  The sooner I lost that idea, not easy to do, the better I was.  I had graet help from my wife and others and used the social worker at the cancer center to help me get though it.  Just starting to come out the other side now.  It does get better, but be prepared to take it easy and to just do treatment and get better everything else is secondary.

Crazymom's picture
Crazymom
Posts: 259
Joined: Nov 2011

I am very similar too.  Stage SCC Stage III  Left tonsila and 2 left lymph nodes in younger 50's and HPV positive.  Do not get behind on hydration or you will get horribly constipated.  Take medicine for nausea consistently and you will not have as many stomach problems.   My last radiation was March 2012 and I have been NEd for the last 11 months.  Good luck ...it is a hard road, but you can make it.    Ann 

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