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Squamous Cell in the left Tonsil(P-16 Positive) and left Lymph Node

CaptainJack's picture
CaptainJack
Posts: 4
Joined: Dec 2013

Hello everyone,

As the title says, just diagnosed with cancer and they are getting ready to treat me at OHSU and the Portland Oregon VA.

I've been told I will receive thirty five radiation treatments and three chemo treatments. Side effects include loss of saliva

gland on left side of mouth, potential loss of some or all of my molars, no taste buds for six to nine months and diffculty swallowing

for who knows how long.

My question has to do with course of treatment and I'd like to hear from anybody that has been through this already.

I'm more than a little concerned about the amount of radiation they will be administering given my lack of symptons.

My grading is T-1, N-1, M-0. The tonsil has no visiable signs of a problem(four scopes up the nose and they couldn't find

anything, one general anesthesa session with a scope all the way down the throat and on the way out they did the needle

biopsy on the tonsil) and the Lymph Node on the left side of my neck seems to have gotten smaller in the last three months.

They are going to do a PET/CT body scan to look for any more cancer in two weeks.

Does this course of treatment seem a bit much given the findings?

Thanks for any thoughts or input,

Jack

PS Where is spell check on this site?????

KTeacher
Posts: 894
Joined: Jan 2011

I am Pirate Grandma on another site.  Kteacher (retired) here.  Right now you feel fine, except that you have cancer.  Others with tonsil cancer will chime in soon.  Your treatment is spot on to what most of us have had.  Dental appointment and PET Scan are good to have done.  Take notes at doctor appointments.  Read the Superthread to get an idea of treatment and what things you might need to get before treatments begin.  My daughter lives in Portland and grandbaby was born at OSHU.  You are in beautiful country, wet but beautiful.  Stay in touch.  This is a very honest, supportive group.

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Jack,

Welcome aboard the H&N forum, so sorry you have to tie-up here.

Your treatment plan sounds like 95% of us here.  They will give you just enough radiation needed to kill the cancer (and a little more).  They get a lot of practice at this and they are pretty accurate on what to do and how much.

My only symptom was a swollen lymph node on the left side of my neck.  I had no idea that stage IVa, scc, bot, hpv+ was brewing in my tongue and neck.  To this day, I never felt anything.

After the PET/CT your team will fine tune your plan and before you know it you will be started and then finished.

The side effects are as you described, but you have to live it to really understand it, but honestly you do recover, the road just gets a little bumpy (sometimes).

Coming to you from the Willamette Valley.

Matt

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

What you just got is a pretty standard recommendation.  But you are right, it is a lot of treatment, and possibly more than your situation requires.   For example, chemotherapy is not a universal recommendation for T1, single node situations like yours.  And there are research protocals for less radiation in cases of HPV positive situations as well, some as low as 28 sessions, whicch is a lot less than the standard 35 treatment ordeal.  Notice I said research protocals.  The numbers are not in yet, though it is clear the cure rates are so high in situations like yours that lesser treatments may be effective.

If limiting short and long term side effects is a super high priority to you, you are one that might consider a second opinion from one of the national referral centers.  Whatever you decide to do, welcome to the club.

 

Pat

 

 

 

lorig01
Posts: 67
Joined: Jul 2012

Hi. I had T1-N-1 M-0 tonsil cancer and completed treatment Sept. 2012.  I am in Houston and was treated at UT Memorial Hermann. I was told that with T1, N-1 I could do the TORS surgery so I could avoid chemo.  So far so good.  My ENT said that the tumor was so small that he was hoping to avoid radiation but the cancer board recommended radiation after surgery because of the 1 lymph node.  I had reduced radiation on one side only.  I have had clean scans so far and have very little side effects. I had a PEG Tube for 5 months because everything tasted horrible while recovering and I have very little extra weight to lose. Having the PEG took the stress out of trying to find something to eat and to maintain calories. I have some dry mouth now but can eat most things. I am used to it now and I have been back to work now for 1 year and I am doing well.

I agree with LongTimeSurvivor that it would not hurt to get a second opinion to see if you can avoid the chemo. 

 

KB56's picture
KB56
Posts: 241
Joined: Apr 2013

Jack, welcome ot the site and sorry you're here but there is a lot of support for you from the folks who have been through this.

My cancer started in my right tonsil and by the time i was diagnosed, it was stage 4 due to the number of lymph nodes but it was very contained to my neck area and had not spread beyond that area yet to other parts of my body.    I had the tonsillectomy to remove the right tonsil but no other surgery since the lymph nodes were wrapped around all the stuff running down the neck from the brain to the rest of the body (juglar vein, carotid artery, etc) and had paralyzed my right vocal cord.   Other than the right vocal cord paralyzed, i really didn't have any other symptons as my tonsil didn't hurt, no sore throat, etc.  but in hindsight I could feel something swollen in my neck and just didn't do anything about it.... big mistake...

Your treatment sounds pretty standard, I had 34 radiation treatments and 7 chemo treatments (Erbitux - which the doctor said was newer, less toxic than previous cancer drugs and was very effective against HPV type cancers).   My personal opinion is that you only want to do this once so if 35 treatments will knock it out once and for all then that's what you want to do.   To do some number less, but have a chance that it won't kill the cancer and have to repeat it down the road would be tough.   I've had 2 clean scans since i finished and so far so good.   

As someone recommended, go to the dentist and get a good checkup and get a flouride tray.  I use it every night still today (my last radiation was 6/11/13) and have since day one of treatment.  I've been lucky so far as my teeth have made it though it but I brush probably 6-10 times a day and floss every day at least once because of what i had heard about radiation and teeth.  I avoid all sweets if possible, immediately brush after meals and so far so good.  Lack of saliva is also tough on the teeth as saliva helps fight decay as well.

They will be very careful with the radiation and will hit your left side really hard but will do what they can to minimize radiation to your "good" side.  I only had to shave one cheek for months since they tried to save the saliva glands on my left side and my saliva is coming back slowly but surely but it is coming back.  My chemo wasn't too bad after the first one or two but the radiation was brutal for me.  Not trying to scare you but it's better to be prepared mentally for the worst and if it's better then that's great.   You also should consider a PEG Tube (feeding tube) and there are many debates on this site pro and con but for me I don't know how I would have done it without it.  I lost 30 pounds with it (12 just during the tonsillectomy) but you can also take your meds through it (I couldn't swallow a pill after several weeks of radiation much less eat food) and you can also stay hydrated through it which is critical as there's nothing worse than being dehydrated.  My thoat was really sore 5 months after I finished treatment so it was a struggle to eat well after I finished treatment but after 5 months it started feeling better and improved pretty quickly from there.

Good luck as you start the fight.  You found it early and the treatment won't be pleasant but everyone one this site has done what  you are about to start and there are so many positive stories of doing great when they finished.   Stay positive and it will be over before you know it.

 

Keith

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

to the best forum on the internet when it comes to HNC.....the people here are the BEST!!

Longtermsurvivor is the go-to guy on technicalities.....like how many and how much treatment someone might need, so maybe another opinion might be the way to go for you.

As it stands right now, they are lining you up for what I think of as normal/regular treatment.  35 rads, and 3 chemo's, 3 weeks apart....there are variations depending on how well a person's body handles chemo, some get a lesser dose every week during radiation rather than the 3 large doses.  I had the same treatment as they are prescribing for you.....but because I had NPC rather than tonsils, I had another 3 chemo treatments after the rads were over. 

Stick around here, and ask any and all questions you have as you go through this.....the Drs. are the experts on treatment, but we have many tricks up our sleeves on how to make it as doable as possible.

p

hwt's picture
hwt
Posts: 1847
Joined: Jun 2012

If you have questions, I suggest getting all the tests and a second opinion. I wouldn't get any more rads than absolutely necessary to get the job done. Anything that would give you fewer long term effects. We aren't experts in determining that and have to leave it up to the professionals. At the time, I thought the amount of my rads was overkill, turned out in the area where I got "drive-by radiation"I ended up with a recurrance. 

Best of luck for an easy and successful journey.

Candi

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Captain Jack, I am so sorry you have joined us - I too was diagnosed with SCC stage 4 of the tonsil and 2 lymph nodes, each about 2-3 cm, back in October last year.  Your treatment sounds similar to mine but I received chemo once per week at a lower dose than typically prescribed at the 3 week interval.  The docs here feel it makes for better health for the patient following the chemo treatments.  I had a CT that showed an enlarged lymph node and scoped adn biopsied by an EN&T following the scan.  Two days later it was positive.  4 days later I saw a H&N specialist.  I then had the PET/CT to show it was localized and the planning began for my treatments.  I had a port put in to make chemo easier, a PEG tube put in early before treatments, I recommend if the docs do, and a salivary gland on the good side moved to preserve it from the radiation treatments.  Oct 22nd I saw the specialist and thanksgiving week I started treatments.  I have one week of treatments to go and one more chemo tomorrow, at this point they can see no tumor on the tonsil and maybe a 1 cm lymph node left.  It has changed my life to say the least. Many of the vets and pros on here will give you first hand accounts, advice and help - all wonderful, I lost taste about 2 weeks in - my meals are Ensure daily and I hydrate by taking Gatorade through the PEG.  Water starts to taste funny sometimes so I put blueberries in the water bottle, it helps.  The group I am with is out of Johns Hopkins at GBMC and they have been fantastic.  This site and the people on it helped me prepare, have helped me through this and rescued me more than once when I needed to lean on them.  My wife calls them my lifeline, I just think of them as special, so very special and I leave it that I do not have words to describe how they have helped me and comforted me, taught me, and lifted me up.  I am making it through, and will make it through and they have been there with me every step.  As they will tell you it is a rough road but doable.  You will learn how to take care of yourself, learn the routine that works for you and you will get through it. 

Ask questions of this wonderful group of people who have a limitless supply of compassion and energy and life! 

Steve

CaptainJack's picture
CaptainJack
Posts: 4
Joined: Dec 2013

Hey Steve,

I was just re-reading some of the posts and noticed your mention of having the salivary gland, on the good side, moved to pretect it.

I was told at my panel that I would probably loose my left side gland(the side with the p-16 positive tonsil and lymph noid), but the other

side also?????

I tried to do some research on the gland moving and not much came up on a search other than trial papers. Was this your case, part of a

trial or is it now a common procedure? Boy, if they can do that prior to rad treatment, I would definetly opt in.
Jack

catfish_58's picture
catfish_58
Posts: 117
Joined: Feb 2013

Hey Jack,

     Lots of people here that can help you out with your questions,I can only tell you what I have experienced I was diagnosed with SCC of the left Tonsil, HPV+,stageIII,took 33 Rads and 7 chemos of Cisplatin,One advise I can share is I wouldn't suggest to go google crazy over this a lot of negative areas out there,this is a very doable treatment tough but doable the Superthread (Read only) ~ contributed by Sweetblood22 is a very good place to start,I had a similar problem with my course of treatment too.I would think it is a good thing to do to be sure about everything.The  PET/CT body scan should help them decide the next course of action to take,I would just give you my advise until you know for sure whats going on is to stay positive and keep us informed and ask as many questions as you can with us and your doctors,for the taste buds and saliva questions everyone is different on those,for me I have almost all of my taste buds back and probably a little saliva maybe 5% but am still looking for that saliva ,I'm almost 9 months post.Last but not least I am still looking for that spell checker too.

CaptainJack's picture
CaptainJack
Posts: 4
Joined: Dec 2013

Thank you all for your insites, alot more replys than I expected.

I've spent alot of time on the web reading research papers, this is my first time posting questions on any forum.

My case is a little unique in that I have an auto-immune disease, RA, and my immune system has been shut down for almost ten years.

I took myself off my immune suppressor drug in mid December to allow it to come back prior to treatment and have been very heavily into

probotics to help my gut bacteria recover from two rounds of anti-bioatics given to me when it was thought my lymph noid might be infected.

The curious thing was that none of my doctors asked about these two items, I'm doing it on my own. My research found two very interesting tidbits;

turkey tail fungus(the only FDA approved adjunct to cancer treatment) and the dramatic reduction in effectiveness of chemo when your gut bacteria

is not up to speed. When I presented the papers to my doctors, they had never heard of these.

I am getting a second opinion in about a week at a local clinic, considered one of the best treatment centers in the state of Oregon.

What was curious to me was the PET/CT scan is being done on the 21st of this month and treatment starts the 27th. They've got me lined

up for treatment, but havn't seen anything but a CT scan to my neck from Oct.

One of the questions I have for all of you is how debilitating is the rad treatment? And how soon will I start having reactions to radiation treatment?

My wife and I live three hours from the hospital and I had

planned on coming home on weekends(early Friday morning treatments and Monday afternoons would give me three day weekends).

The VA is putting me up in some on campus rooms for treatment patients and I imagine there will be some weekends that I won't feel like driving,

but am I being realistic about spending most of the weekends at home(and driving myself down and back)during a seven week course of treatment?

The idea of a feeding tube is not where I want to go during this. I would rather stay on liquids for the long term(if I can swallow)than get the tube.

Thank you all for your time and thoughts.

Jack

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I was also tonsils... STGIII SCC Tonsils and Lymphnode, HPV+... Dx Jan2009, sixteen weeks, four chemos, seven weeks concurrent rads with chemo..., all clear since finishing up in Jun2009.

Rads are tough, you never know how bad you will be until you get into it...

Myself, and with no PEG I had it relatively easy.. Starting about 3 weeks in, I jusr switched to Ensure Plus, with meds before and after to kill any pain I might have durng the Ensure, water and a few sliced peaches to keep the throat swallower working...

Some have it very rough, can't eat, get hospitalized, raw seeping neck...

One end to the other and somewhere in between...

Hope for the best, prepare for the worse...

Hydration and calories are key..., not for enjoyment, for survival...

And a positive attitude and strong will doesn't hurt either...

Best,

John

CaptainJack's picture
CaptainJack
Posts: 4
Joined: Dec 2013

Thanks for the reply John,

Yeah, I'm hoping for enough replys to my question to get a conscience of side effects of the radition to

figure out if I will be able to drive for some of the weeks during treatment.

Quick question, I'm assuming the side effects will get worse over the seven weeks, is it primarily after

treatment for a few hours or does it last till the next treatment?

My speech therapist gave me several exercises to do prior to treatment to increase my ability to swallow

once the side effects kick in and there was no mention of a feeding tube at the doctors panel(they covered

damn near everything else you could think of)a week ago Thur., so I guess they think I'm one of the one's

that might get through it without the need for the feeding tube.

Thanks,

Jack

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

There's a few of us...

Some swear by it, and it was a life saver... and some of us made it fine... Just another of those things you don't know...

Even a few made it all the way through treatment, and ended up having to get a PEG after the fact for a short period...

On the effects, again, all different... For me I think I actually kinf of plateaued at 3 - 4 weeks..., didn't get better, just didn't get worse.. That lasted for several weeks post treatment before noticing a postive upswing...

JG

mbfshdcsn
Posts: 3
Joined: Jan 2014

Hi Jack;

If you are like me you will get through this without the feeding tube.  As I mentioned previously I am starting week 4 and feel fine physically.  I have developed a case of tinitus as the chemo is ortotoxic.  Hopefully that will improve once the treament stops but those kind of side effects I am told are more permanant.  A small price to pay for my health.

I take the train each day or drive to the hospital from the Philadelphia suburbs and it is not a problem.

I saw a speech therapist as well (my daughetr is becoming one) and the exercises will help keep your throat open.

I have started to see the dry mouth and thickening saliva but I am managing it ok.  Time will tell if after week 4 (chemo and rad) if it will get worse.  I will keep you posted.

You will get through it.  Keep positive and find what makes it easier.  For me it is tea.  Eat what is appetizing at the moment.  Keep hydrated.  Interestingly the worse tasting think is water.  Even cold water tastes like swamp water.  Thank god for tea

 

Steve

 

 

 

 

DaveJay's picture
DaveJay
Posts: 8
Joined: Dec 2013

John,

Can you explain this a little better?

You said:

"Starting about 3 weeks in, I just switched to Ensure Plus, with meds before and after to kill any pain I might have durng the Ensure, water and a few sliced peaches to keep the throat swallower working..."

So at three weeks into Radiation, you switched from normal food to Ensure Plus.  What meds do you mean before and after?  If you there was pain with the Ensure Plus, wouldn't there be pain swallowing the meds? 

And with the peaches, did you chew them and swallow them, just to get something a bit bulkier than the Ensure Plus?

I'll be starting Radiation in two weeks or so and just want to understand what you went through.

Thanks, DaveJ

 

 

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

At about three weeks into rads, the throat was pretty raw inside and it was getting hard to swallow much any real food. So with meds, I figured I got more bang for buck so to say taking in calories with Ensure Plus (35o calories/cn).

I had a system..., I'd set everything up before feeding and hydration...

2-3 cans of Ensure, 1-2 glasses of water, 3-4 DelMonte Sliced Peaches in Light Syrup, a teaspoon of liquid quci pain killer like either the Magic Mouthwash, liquid oxycotine or hydrocodon, and a ground up percocet in a half glass of water.

For me, I took the liquid meds which were good for 10-15 minutes, drank Ensures and water, as much as I could hande..., ate a few peaches which were easily chewed or even just swallowed..., more Ensure and or water, then top it off with the ground meds in water to kill any pain to follow or a longer time frame.

That (and very warm showers) seemed to get me through...

I figured that I couldn't eat enough real food to get in the same calories without killing my throat, so I opted for liquid calories...

You want to exercise the swallow muscles to keep them working... I know of some that have actually lost the ability to swallow because they didn't use the muscles..., or at least there is a chance of that.

I wasn't prescribed a PEG, would have gotten it if needed..., but it was never an issue...

The pain from the tonsils removed was actually more sever and intense, just for a shorter period of time.

I drove myself to most all of my sessions and home...eve with taking a little Xanax to knock the edge of on the initial few days of anxiety...

It's all new rads, you just need to find what works best for you to get you through as comfortably as you can..

JG

KB56's picture
KB56
Posts: 241
Joined: Apr 2013

For me the first couple of weeks of radiation were not too bad but starting week 3 it went downhill fast.   I had a horrible gag reflex due to the radiation so I threw up every day once or twice.  I had a nausea patch, as well as took Zofran, but it really didn't help.  I could really only sip water and couldn't eat, take medicine or anything else orally as it all went into my feeding tube (as well as additional water to stay hydrated but I still had to go get IVs twice due to dehydration).   When I started radiation i was in a weakened state (lost 12 pounds) due to the tonisllectomy so I never had a chance to "fatten up" before starting radiation and chemo - my ENT wanted to wait a minimum of 3 weeks after my tonsillectomy to start treatments so on day 21 post tonsillectomy it started.

Like I mentioned before, my chemo wasn't too bad after the first 2 treatments but I really stuggled with the radiation.  I never had to stop taking it for a few days like some i"ve seen on this site but I felt absolutely horrible, had pretty bad radiation burns on my neck towards the end (which they give you stuff to treat it which really helps) but it was by far the hardest thing I had ever been through.   I would not have felt like driving after week 4 for sure and friends, family and my colleagues at work all signed up to shuttle me back and forth for treatment.

Good luck and we'll be praying for you!

Keith

 

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I have been taking the turkey tail mushroom supplement Paul Stamis is a genius (called Host Defense) all along as I have read how it boosts the immune system during cancer treatments in NIH studies.  Most MD's do not read about adjunctive therapies.  I also have auto immune diseases and take probiotics as well.  My sense is that after several assaults to my immune system, the HPV-16 virus that was within took over when my immune system just could not handle anymore.  Age plays a fator here as well as I am in my 6th decade and the immune system decreases as one ages.

Make sure if there is a tumor board at the hospitals you go to that your case is reviewed by the different disciplines and get theri recommendations and thoughts from your MD.

As to feeding tubes I am not the best person to ask as I had a terrible time and had to have 2 surgeries and 2 tubes (first one just came out) a hospitalization and 5 weeks of pain only to find out I could swallow the entire time and did not need all of that aggrivation.  But some on here have found it a life saver.

I also had TOMO/IMRT and IGRT which is supposed to spare collateral organs and tissues and perhaps that helped also.  It is often available at larger cities.  I think you can spend weekends at home, you will need lots of rest, soup, and supplements.  I also exercised the entire time through my treatments, although not as vigorous as before.

Best of luck to you and keep asking questions of all of us,

PJ

 

mbfshdcsn
Posts: 3
Joined: Jan 2014

Hi Jack;

My name is Steve and I live in Philadelphia. I was diagnosed in October after several months of complaining to the doctor about the gland in my left neck.  even the ENT thought it was an infected gland and after 6 weeks of antibiotic and steroid treatment they finally did a needle biopsy. 

I had a robotic surgery in November which did not find a primary tunor.  I started my 35 radiation treatments January 7th and have had 1 of the three chemo courses (platinol) with the second coming up next week.

I am 57 soon to be 58 (Feb 3) and live a health lifestyle.  I play ice hockey, golf and umpire baseball.  

So far I have had a couple of sick days, and while my throat is sore I have had little problem eating.  Everything tastes like crap and hot tea helps soothe and wash the food down. It has been a godsend.

I am fortunate to be treated at Pennsylvania Hospital.  The surgeon, radiation techs and others have all been wonderful which certainly makes the process as easy as possible.

So far the tumor in my neck is shrinking and my PET scan shows no remote desease so I am fortunate that once the treatment is done I can recover.  I am counting the days to baseball spring training, and getting back on the course.

Listen to your doctors and do wjhat they suggest.  I hope that your prognosis is positive and your recovery is quick.

 

Steve

 

 

 

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Hi Steve,

Welcome to the H&N forum, where food tasted like crap (at some time) to many of us.

Feel free to start a new post and introduce yourself.  We are always open to question or comments.

Your journey sounds normal so far.  Good luck on the remainder.

Matt

mbfshdcsn
Posts: 3
Joined: Jan 2014

Thanks Matt I will start a new post to introduce myself.

 

Steve

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Hi Steve,

Welcome to CSN! Sounds like your treatment is going very well and you are avoiding many of the nasty side effects. Be thankful and keep doing what you are doing as it seems to be working. Just about any question you have will be something someone here has experienced so you can get some first hand response.  Good luck. Don

BRIGHTSTAR2013
Posts: 11
Joined: Jan 2014

hello captain jack

i have npc t2 n0 m0 .  npc involved squamous cell carcinomas. my tumor originates in the indentation behind the eutaschian tube opening into

 the throat. docs think most likely there are microscopic cancer cells in the lymph nodes on both side of my neck, and collar bone that dont show up in the scans.

they want to treat the lymp nodes, the surrounding tissues and the main tumor site. my treatment plan consists of 33 rads and 3 chemos. docs want to make sure the cancer cells dont come

back. i have 6 rads and 1 chemo more to go. in my opinion i think your treatment is ok. however i encourage you to get a second opinion from the professional. 

 

good luck captain jack. see you around.

 

 

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