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New here - wish I would have found sooner! SCC-HPV Tonsil

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Hi everyone, my name is Jamie (male) and I'm glad to have found this forum.

 

In September, I was diagnosed with Stage 2 right tonsil cancer, HPV16 positive, spread to two lymph nodes that are side by side. My tonsils were removed (not fun) and the biopsy of the tonsil showed a 2.2 cm tumor that was completely encapsulated within the tonsil that had not spread to surrounding tissue or salivary glands - confirmed with CT scan and biopsy of surrounding tissue. When I healed from surgery I was sent to Mary Bird Perkins Cancer Center and was told that I had to have ALL of my teeth removed, which I did (not fun, either). So, here I am, fixing to begin a treatment plan of weekly low dose cisplatin and 35 rads over 7 weeks.

Since I have had to wait for all this time due to healing from surgeries, the two lymph nodes have enlarged quite a bit. At the first CT scan, the lymph nodes were 3cm & 2cm. Now they are probably 4cm and 3cm (just had another CT scan and the mask made on Thursday, so I don't know the results yet). I had a follow-up with my ENT and I discussed a lump sensation in the back of my throat. She checked me out and said there was no evidence of any tumor re-growth in the area or at the base of the tongue and said what I was feeling was the enlarged nodes pressing in against my throat. Now, a week later, it isn't as tolerable of a sensation as they are pressing in more.

So, my questions or this:

How long does it take for the SCC-HPV tumors to reduce in size?

Is the nausia well managed by the time the throat is burned up from the radiation? (The idea of vomiting stomach bile into a burned throat is horrifying to me)

The treatment table seems to hurt my back (discovered during my mask making experience). Is there anyone that has dealt with this?

What is the most common long-term affects of treatment?

How has the treatment journey been for those of you with treatment plans and diagnosis simlar to mine?

 

Sorry for the long post and thanks to anyone that replys to this.

KTeacher
Posts: 908
Joined: Jan 2011

Welcome to our group.  Many will chime in with very similar experiences.  I will start with the table and sore back.  It takes a lot longer to make the mask and recheck the mask than it does for radiation treatment (probably only 10 minutes).  Did the tech put a pillow or wedge under your knees, that seemed to help me.

Nausea is well under control if you use your meds at the first sign of feeling ill, if I waited I would be visiting the 'throne'.

You will want to read the Superthread at the top of the posts.  Tons of information for before, during and after treatment.

Make sure you stay hydrated.  Dry mouth is the most common side effect, some continue for a long time and others start to recover soon after treatment.

Stay in touch and feel free to ask questions.

catfish_58's picture
catfish_58
Posts: 123
Joined: Feb 2013

Hey jamie,Sorry to hear about your diagnosis,but you came to the right spot for answers I know others will chime in and let you know what they went through,For myself i had stage III,HPV +,left tonsil primary and a mass under my left ear with 1 lympnode involved,had teeth checked and was told that they would be ok,did a swallow exercise and was fitted with a peg tube for later,was sure glad of that lifesaver for after about two to three weeks into the radiation and chemo treatments my throat had swollen and was very difficult to swallow,The mask was wierd yea it took longer to make than what the treatments go for they were not too long, the chemo made me nausea the oncologist gave me medicine for the sickness and told me to take them even if i was feeling ok,Yes i would read up on the superthread (Superthread (Read only) ~ contributed by Sweetblood22 ) there is stuff for sore throat to shakes for swallowing,stay hydrated and yes they should put a pillow under your knees for more comfort,plus pack on the pounds you'll need em.

benjamin2121's picture
benjamin2121
Posts: 24
Joined: Oct 2013

I am glad you found this site...it has helped me a lot....I have or hoping soon to say had stage 4 larynx cancer that also was in one of my nodes...35 rad treatments and was scheduled for 3 cisplantin doses but my white cells levels wouldnt allow me to have my third...the mask and the table are never fun...i found that if they let me bend my knees and bring up my legs it seemed to be more comfortable....and they let me use a pad under my back...I also had hpv cancer which is very sensitive to radiation so that is the good news....my tumor was about the size of a golf ball in my larnyx...and after the end of my treatments they scoped my throat 3 weeks after...it had shrunk to the size of a pea and the node swelling seems to also have gone back to normal...so to try and answer your question the best i can without the usual...everyone is different answer most folks give...it can shrink very quickly and continues to shrink as the radiation works for weeks after treatment ends....the node went up and down during the treatment....the doc said that was normal reaction to the treatment....my thoughts are with you and you are not alone....there are lots of folks here that are going thru or have already been thru this same stuff....i am in the waiting for 5 weeks more to have the first pet scan since the treatment to see if treatment worked....and utilize folks here to help keep me sane during the wait...keep your attitude positive and know that each day you get closer to getting better

 

Benjamin

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

You have a similar Dx to what I had, January 2009...

I was STGIII Right Tonsil and a lymphnode on the same side... I had the tonsils out and like you said, not fun. Then a power port implanted for the induction chemo to come.

I had nine weeks of chemo in three weeks cycles, Cisplatin, Taxotere and 5FU (via a pump 24/7 fpr four days).

For me the tumor wasn't take out upfront, they chose to wait and see IF the Tx would either shrink it or eliminate it so as to be less invasive if a dissesction would be needed.

For me that was a good call... After week six the tumor was barely noticeable, at week twn it was completely gone, per a CT.

 

Now for me though, that's when I got in to the phase you are about to start..., seven weeks of concurrent weekly Carboplatin, and the 35 daily rads sessions...., highly recommended by my ENT.

I am going on five years post Dx and been clean and clear since...

I'm not sure there is any guarantee the tumor will shrink, though I know it has oh many here, a few not completely gone though without surgery or additional treatment.

As for the rads table, more than likely you're going to be so amped up, the 12 - 15 minutes on it will be the least you're thinking of... I  had to have a little Xanax initially, but didn't need that after the first few days.

I had EMEND the first few days of the big chemo doeses, never at all sick feeling... The rest of the time was just something like Zofran... But in reality, I never felt that bad 90% of the time...

Again, welcome... It's rough, but doable... To me, the tonsils coming out was probably the more intense of the entire treatment. It's just that the time to recover and heal from rads takes a good 3 - 6 months to really notice progress and feel good most of the time.

I don't really have much for longterm effects other than drying out a little at night, and increased acid reflux at times.

BTW, I didn't have a PEG, nor did they pull any teeth, though many here have had both.., and some neither.

As for the journey, for me it wasn't really that bad at all considering... I worked at home full time (computer work), took care of the lawn for the majority of my treatment. Though didn't have much energy toward the end of rads and a few weeks past, so I hired a crew at that time.

But I did manage to still go fishing and take the boat out every few weeks...

Best,

John

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Jamie,

Welcome to the H&N forum and we are glad you found us too (thanks Google).

I was stage IVa, scc, bot, 1 lymph node & hpv+ (surgery, rads & Erbitux) and I am happy to say “so far so good”.    Happy to say, I feel great, sleep great and eat great.   I figure my taster is from good to fair, my dry mouth is pretty good and in general everything is still improving (at 19 months post).

I chose to have as much of the cancer removed before rads and Erbitux so, there wasn’t any size, but there was that pesky PET/CT scan which identified the areas of interest. 

Take the nausea drugs before you get sick otherwise you keep chasing your tail.  This is no time to tough it out, your body will need all the help you can give to make your trip doable.  This goes double, no triple for drinking lots of water and staying hydrated (Best advice I got and took from the H&N members).

Ask for eye holes, take some good music CD’s, tell them about your back and reduce rads to a ½ hour a day.  Even though I had to take a Lorazapam before each treatment, I found interest in the room, the machine, the line-up lasers and loved my techs, they were fantastic.

For me, so far, the biggest, in your face side effect is my taste is not what it once was.  Don’t get me wrong, I eat anything I want and more and more foods are coming through all the time.  I enjoy some things a great deal others not so much.

The dry mouth is continually getting better and I can stray from my water bottle now and I use Xylimelts to aid the problem when I don’t want to be drinking water.

We all had similar treatment plans it is how our bodies react, respond and recover from side effects where we are different.

Good luck from the West coast,

Matt

Too much??

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Thanks so much for the feedback so far. I think, right now, I just want the size of the node tumors to go down and stop pressing on my throat. It feels obstructive. I'm also hoping that the CT scan I just had on Thursday is as clean as the first one I had. I'm supposed to start treatment on Tuesday, but I've yet to have a PET scan. It also seems as though the Dr's have a "let's wait and see what your reaction is before we prescribe you anything". I am of the mindset that they should go ahead and give me the Magic Mouthwash and other things that they already know that people will need. That way I will have it on hand.

Also, I'm beginning to feel a little cancer-ish now. Tired for no reason, sweaty at wierd times and wierd places (like my feet), and the obvious uncomfortableness of having the node tumors on my neck.

Any tips or tricks? I would love to hear them. I have read much of the super thread, but I'm still trying to sort through all of the info.

 

Thanks again.

KTeacher
Posts: 908
Joined: Jan 2011

You will begin to have more fatigue that you can not work through.  You will get much more sleep than you ever had before, especially if you need meds for pain and/or anxiety.

benjamin2121's picture
benjamin2121
Posts: 24
Joined: Oct 2013

well I can only tell you about me but my wife and I are constantly feeling my neck and like I told you when the doctor checked on our last day he couldnt feel a thing he said...but I have a feeling we will be touching and checking for a while to come...and if your are not happy with your doctors course of action or its speed....I would get a second opinion....we did and ended up packing up the family here in Texas ....driving to and getting all my treatment in minnesota...in fact when  MD Anderson finally called me to start things....I had all the scans and pre treatment done and I was already in my second week of treatment...so I am a firm believer in second opinions...this is one case where it is all about you and your treatment.

 

Benjamin

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Jamie,

Wait and see is not such a bad idea.  Very few of us got very many difficult side effects.  For me it was neck burn during weeks 6, 7 & 8, worst pain of my treatment, but I had silver sulfadiazine cream and the pain was under control.  Some here have no neck burn or very minor.

If you get the hint of sliding sideways, let us know and someone will try to help.  We all have a pretty good idea of what will happen, but there is no reason to scare you.

Believe me in a couple of months you will likely be putting this behind you, but you can expect a bumpy ride till then.

Go out and eat, take a ride, be happy you have a plan.

Matt

Charles77066's picture
Charles77066
Posts: 12
Joined: Aug 2012

Looking at your post we're like cancer twins. I had to have my teeth removed to, and it sucks you don't realise how important your teeth are until you loose them, just like your saliva glands. But you fight the battle you adapt and then you overcome. You will win. We're all proof of that. I remember sleeping all the time , sometimes 20 hours a day. I was always cold. I couldn't eat. I had to use my feeding tube. I lost 41 lbs. I'm 6 months cancer free and moving on with my life. If you have any questions feel free to ask.

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

on the table. Rob had a wedge under his knees and then they made a special neck pillow for him as he flet like he was choking without it.

His lymph nodes and tonsils really swelled after digging around for biopsies. That could be the problem. His nodes were noticeable when looking at him but after the FNA they jumped out. They were in there really digging around. He did not have his tonsils out as the research showed no difference in leaving them or taking them, they were going to get fried up anyhow.

After radiation was complete the largest node was a size of a pea and the docs told us just wait, by the time he has his PET it was gone. Radiation the gift that keeps on giving.

We are 5 months out and he is doing great. Back to work full time. Still has dry mouth and certain foods don't taste right but we are confident that most will come back with time.

Best of luck, keep us updated, and prayers for you being here in 4 months Cancer FREE

Sandy

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

Don't appologize for the length of the post. Some of us are wordier than others. My husband, Jim, had base of tongue cancer stage 4, two lymph nodes. His tumor pressed on a nerve that gave hime great pain in the ear. The pain went away quickly when rads started. Jim also had pain in his back when on the table. He didnt say anything until a few days into treatment so was out of luck in adding padding for his back since it would make the alignment off. So if you didn't tell them when making the mask, probably can't do anything now. As for burning throat, Jim didn't have much problem with that, others did. Magic mouth wash helped with the pain when he did have pain.

Sorry you have to be a member of this group, but welcome. This group has been a real lifesaver for Jim and I. Praying your time in treatment is not to bad and you end on the NED note.

Debbie

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Debbie how is our fishin man...., wind must be driving him nuts by now...

Prayers your way,

John

nick770's picture
nick770
Posts: 195
Joined: May 2012

hey Jamie, Welcome to the forums. 

You have met and will meet some great folks here. And the wealth of information you wil receive will invalubale. I learned to much from theses guys. 

You will learn many tips/tricks from the folks who have gone through this vs. someone (doctor) who has put someone through this.

 

I wish you the very best in your fight 

phrannie51's picture
phrannie51
Posts: 3664
Joined: Mar 2012

slice of the internet.  Looks like everybody has said many of the things I would have said if I'd gotten here earlier Smile

Treatment plans are pretty much the same....some different chemos (Erbitux, Cisplatin, Carboplatin, 5FU)....but the plan they have for you I have read many times on this board.  I had 3 high dose Cisplatins, one every three weeks.....then another 3 high dose Cisplatins along with 4 days on a 5FU pump.  35 radiations...just like you. 

Do ask them for something to put under your knees, that will take the pressure off your back.  Don't tough anything out during this treatment....just ask, the huge majority of places will accomodate your every need within their power.  Same goes with nausea meds....don't wait for them to offer, tell them you want them, and as Matt said, don't wait till you're sick....start taking them immediately after chemo....I did throw up a number of times during threatment, and had the same horror as you....MY POOR THROAT AND MOUTH....however, when it was over, a little swish and spit of soda/salt solution seemed to put things back to right. 

Three weeks into rads/chemo my nodes had shrunk quite a bit.....and by the 5th week they were back to normal.  Once you start treatment you'll know they aren't going to get worse, and you will shortly start feeling relief from the pressure. 

For me the long term side effects are pretty common....lack of spit, and my taste buds have not come back full fledged....I have a few other things that only affect a few of us....I have lost feeling in my finger tips, and feet.....ringing in my ears.....a never ending runny nose.  All very liveable things, tho. 

p

genie123
Posts: 6
Joined: Sep 2013

Hi welcome! I just want to ask what is the 

reason for removing all your teeth ?

genie123

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

I believe the main thought from most MD's evolve mainly around future complications of those that already have problems or potential problems with their teeth.

The chances of lower jaw bone blood flow is a real possibility for those that have had a lot of radiation directed to that area.

The lack of blood flow can hinder the healing process for one thing if you have to have teeth pulled down the road, especially the lower teeth. Some have gotten through with pulled teeth and root canals without complications. Many MD's will prescribe HBO before and after lower teeth extractions... HBO +> HyperBaric Oxygen Therapy..., helps to promote oxygenated blood flow.

Some have had bone disease from infection with possibility of having to have bone removed...

Soooo, if you have anything going on dental wise going in..., many MD's would rather pull them and eliminate that possibility...

JG

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

That is correct - they concluded that I had some gum disease and did not have enough time to treat it and get my mouth happy before treatment should begin. The only SAFE option was to have my teeth pulled so there would be no complications. I am not one to risk the complications even though I was heartbroken about losing my teeth. Now I have sort of gotten used to it. I don't like it, but I don't hate it anymore either, lol.

 

Ok, I have another question for you guys:

I had my third tomo treatment today. So - only 32 more to go! However, when I woke up this morning, I felt so friggin sick. I have felt this way all day and didn't know if I would be able to make it through the session on the tomo table. I have been sick feeling all day - zophran be damned. Any of you other people get sick so soon from treatment? I had only low dose cisplatin and two rad treatments. My taste is already being altered and putting things in my mouth to eat already feels like a challenge. Also, already I have developed a hyper-sensitivity to smell. The smell of my wife cooking is hard to deal with - and also hard to cope with because my wife is a Malaysian Chinese and cooks the most wonderful food. I was in food heaven...

 

KTeacher
Posts: 908
Joined: Jan 2011

Cisplatin sent me to the sink, the first sign of nausea take the med.  Food heaven, you will again enjoy your wife's cooking, but just need to take a break!  I cannot eat anything spicey but do love Chinese food.  I ate a lot of won ton soup during treatment, egg fo yung worked for me also.  I had to stay away from the kitchen the first time I was in treatment, any smell made me sick.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Hard to say, could just be you are one of the unfortunate...

I had big doses of Cisplatin, Taxotere and the 5FU 24/7 in three weeks cycles... During those cycles they gave me EMEND..., wonderful stuff. Three capsuls, one for each of the first three days of chemo..., never got sick once.

But for the off weeks, and then the latter seven weeks of concurrent weekly Carboplatin during daily rads, they only gave me Zofran, or Phenergan. Both took the edge off of any nausea for me...

But if it's not working for you, let them know..., they usually have a variety of meds to help you through. Unfortunately it might take a while to figure out works best most of the time.

Ginger Ale works well at times also...

More than likely, you're going to be able to enjoy your wifes cooking again, but it's probably going to be awhile.

It took me nearly two years to get all of my taste back. But I had a huge amount back within the first 6 - 12 months.

But during one point, my wife whom makes awesome soups..., they all tasted terrible. Her homemade chicken noodle soup tasted like hot water loaded with chicken fat..., yuck.

But it's all good now...

Hang in there and remember the big picture..., survival first, all of the rest is gravy... (though it might be nasty gravy for awhile... :)).

Best,

John

phrannie51's picture
phrannie51
Posts: 3664
Joined: Mar 2012

Zophran for nausea, then the meds need to be stepped up.  Like John, I had Emend also....they only give it the first 3 days after chemo, and I don't know if they give it for the weekly doses.....BUT, besides Zophran, I had Compazine and Ativan (lorazepam)....my Onc gave me a schedule that I adhered to strickly until the nausea was gone (I had the large dose every 3 weeks, like John....and it would take 5 or 6 days to get back to normal).  I put my schedule on my expressions page....

http://csn.cancer.org/user/166266/expressions

Be sure and tell your Oncologist that you're feeling crappy all day long....nobody should have to feel that way through treatment when they have plenty of drugs to avoid it.

p

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

I had a similar diagnosis....tumors in left tonsil and two left nodes.  My tumors reduced in size as soon as the chemo startedl.  The worst was the last two weeks of radiation.  Good luck...you can do this..just take a day at a time.  Ann

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