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STG II tonsil cancer-surgery completed, mostly healed.. radiation starts tomorrow..

JohnWylie
Posts: 1
Joined: Jan 2013

Lucky to get this cancer out fairly early but need the radiation to complete the treatments.. Looks like 7 weeks @ 5 daily treatments is fairly normal.  However, I am only getting my right side treated with radiation.  Expecting week 3 to be beginnings of the pain and sore throat but hoping not to need the PEG. and grand visions of being able to continue working for most/all of the treatments. 

Yes, this is related to HPV+ so that seems to make full recovery a much brighter option.. Still nerveous as ever about the whole process and saw some great advice about garging with salt water-baking soda at least daily or as often as needed.  Still have pain meds from surgery-Liquid Perqosets but wondering if the others mentioned here are better.  Peqs make me sleepy and a bit loopy so another option wouldbe great.

Going to Lahey Clinic in Burlington, Mass for treatments and will need to check if they are using the latest IMRT radiation, that I suspect they have available.  Never even heard of that before I found this site.  Speaking of being a novice, I have never been in a hospital or had surgery until this treatment.  I was told the surgery was more than a standard tonsil surgery due to the expected presence of cancer, which the pathology confirmed afterward.  Still having trouble opening my mouth after 4 weeks post-surgery, but I'm eating regular foo, just slower.

The support looks like a really good idea and my wife here to help is going to be key..  There are some pretty scary descriptions of people's experiences here and all are incredible examples of strength and determination to succeed in beating this disease.   I have lost a number of family and friends to cancer, so its a personal experience with a lot of bad outcomes.  Each success brings more hope. 

I will be checking in here as my treatments continue as I expect many others have done.   Looking forward with hope to getting this behind me and getting fully recovered..

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

John,

the best of luck and science to you as you begin your journey. This battle takes tenacity and brute determination! And you can do it! Make sure to ask any question you have along the way, from the doctors and here. We will all be here to cheer you on, and comfort you if you need us. And eat... Eat... Eat! Drink, drink, drink... And your recovery will be much easier. If you have any weight loss, save it for the week after treatment ends, and you'll be strong through recovery!

oh and give your wife at least a hug a day, she'll need them, I had a different cancer, and I think it was harder to watch it the process than to go through the process.

well that's my best advice.. And you'll be in my thoughts and prayers!

Kari

Vee1
Posts: 59
Joined: Nov 2012

You have found an incredible group.  Check out the SuperThread (it is the topic listed at the  top of the list).  The material there is invaluable.   Within this cyber-town are amazing people.  These are caring and good folks and they will let you know if they have other ideas/suggestions .  No topic is off limits to them.

 

I am a caregiver to my 94 year old Dad who is 14/33 radiation treatments down.  The fellow Head and Neck members are making our journey possible.

 

All the best---

-V

 

 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

Hi John,

 

Welcome to the H&N forum, so sorry you find yourself here.  I hope you can follow your described plan but warn you to have fall back positions along the way.  Refer to the superthread for some ideas on what to expect and check into the list of things to have at home prior to starting treatment.  It is unlikely that you will be overly prepared.

 

Starting chemo and rads watch out for nausea first and head it off at the first signs.  Drink lots of water it is better to start drinking before it gets tough.  Tell doctors and nurses about all your troubles, they have seen it before and will likely have something for it.

 

Don’t try to tough out the pain (if any) take the meds.  You want to choose your battles wisely.

 

Good luck and hopes for a smooth treatment process.

 

Best,

 

Matt

phrannie51's picture
phrannie51
Posts: 3845
Joined: Mar 2012

Welcome to the club nobody wants to join.  You have bumped into the best group of people in the world!!  I started coming here last March when I was first diagnosed with NPC (Nasopharyngeal carcinoma)....and these folks lead me by the hand thru treatment (35 rads and 6 chemo's)....I wasn't so sure I'd make it thru when I read about all that people had endured, but I did it!!  You'll do it, too! Smile 

Looks like everybody gave you good advice to start out on.  Another thing, don't get hung up on getting thru without a PEG....there are a few that did it, but it's becoming apparent to me, that somewhere along the line most of us had to get one.  I started out with one.....at 97 lbs they were pretty sure I didn't have much to lose.....and when it was all said and done, I'd only lost 16 lbs.....that isn't much loss on this particular road....but I was pretty skinny when it was over.

Also, work will be a big challange.....I have a pretty easy-going job most of the time but a grueling schedule.  I couldn't have done it, and even when I went back after 6 months, it's taken 3 month to feel like I could handle those times that it's not easy going.  The three top priorities of this treatment are Hydration, Nutrition, and SLEEP.....in that order.....everything else is on the back burner. 

Stick close to this group during treatment.....as questions pop up, ask away....there's always someone here who will be able to give you some ideas.

Here's one to check out before you start radiation.  Ask your Oncologist or you Rad Doc to prescribe you some MuGard..........some doc's have it on hand and just give it to you...I got two bottles for free from my Onc....and when the Mugard company called me because of the prescription they said it was going to be $348....I said no, and they lowered the price to $100 for 6 bottles....so go to Mugard.com and contact them directly if you can't get it any other way....and DO dicker and deal with them.  Someone else on here got the 6 bottles for $50.  MuGard will protect your mouth from the radiation that cause mouth sores.....it worked great me and some others....a couple others it didn't work for.

Encourage your wife to ask questions, too.....there will be days when you just feel like vegging in a recliner.....but still have questions you need answers for.

It's going to be alright!!!!  I mean that sincerely!

p

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