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ricksmithgolfer

Recently diagnosed with Tonsil cancer right side with 3 tiny lymph nodes same side. Nodes are not visible at all. The cancer is HPV positive. This year they did a complete overall of the staging of HPV cancers. In Head and Neck cancers that are HPV negative the staging has not really changed. They have now seperated out HPV positive cancers from the HPV negative. With the old system I would of been a 1Va. With the new system I am considered a stage 1. At this point I'm not sure if that will change the treatment plan or not. I do know they say the overall cure rate for me is well over 90% because of being HPV positive. I sure hope those stats are right. Right now the plan is no surgery, 35 rads and 3 cisplatin treatments. Just had a hearing test yesterday and my high frequency numbers show a mild to modest loss in hearing. Not so sure I want to do the high dose sessions of cisplatin. Meeting with my Oncologist next week to see what she thinks after reviewing my hearing test. Going in next week to do the dreaded MASK day. I'm really scared as I am really claustophobic and have a thing about being held down by something like the mask. Will be taking Activin which I just did for an MRI and it seemed to help for that. The MASK seems to be a different animal though. Getting all the appointments required to get everything set up to start treatment has been difficult. I'm dealing with 2 different insurances and making sure everything is covered by both is a tedius process. Then getting appointments with all the different providers can be a challenge because they can be booked out several weeks. Looks like I should be able to get everything done and start treatment either the week of July 30 or August 06. I must admit I have done a lot of soul searching and crying the last couple of weeks. I just turned 65 on July 06 and for my birthday I had my consultation apponitment with the Onocologist. Never imagined I would spend my 65th doing that. I have been very fortunate during my lifetime and have not ever really been sick, so visiting all these doctors and specilist is a new thing for me. I'm having a tough time with it all and am trying my best to figure out how to get thru it all. I have done a lot of research and know the treatment process is going to be very difficult. I hope and pray I have the mental and physical strength to get thru it all.

MarineE5

Think about Golf

Rick,

I am sorry you are here seeking answers to your questions, but you found a great site with many knowledgeable people here. First, I am sure your mind is traveling at "Warp" speed, but try to breathe when you have time. Do you have any support with you along this road? 

I am a Base of Tongue survivor from 2004 so unfortunately I am not able to answer your questions on the Staging of HPV cancers. The Mask, I can help you with a little bit. I am not claustophobic but when it was first fitted on me, it wasn't too bad, then the first day of Rad's it bothered me. The "Tech's" were good and cut some small slits around my eyes and lips, just enough to let me feel comfortable. Some people need something to calm them down for the first few treatments. Music helps and let your mind wander to better places like the Golf Course. 

Others will be along to help that have gone thru the HPV cancers.

My Best to You and Everyone Here

ricksmithgolfer

MarineE5 said:

Think about Golf

Rick,

I am sorry you are here seeking answers to your questions, but you found a great site with many knowledgeable people here. First, I am sure your mind is traveling at "Warp" speed, but try to breathe when you have time. Do you have any support with you along this road? 

I am a Base of Tongue survivor from 2004 so unfortunately I am not able to answer your questions on the Staging of HPV cancers. The Mask, I can help you with a little bit. I am not claustophobic but when it was first fitted on me, it wasn't too bad, then the first day of Rad's it bothered me. The "Tech's" were good and cut some small slits around my eyes and lips, just enough to let me feel comfortable. Some people need something to calm them down for the first few treatments. Music helps and let your mind wander to better places like the Golf Course. 

Others will be along to help that have gone thru the HPV cancers.

My Best to You and Everyone Here

support

I have my wife of 44 years to help me thru this. And yes, my mind is traveling at Warp speed right now. Just got my appoitment for Monday to get my Mask fitted and what ever else they do that day. Thanks for your reply.

bebo12249

Your situation is very

Your situation is very similar to mine, three years ago.  I was stage 4 in old staging but stage 1 in new staging. I don’t know if there is sufficient treatment research for the hpv16 patients to make a difference in the final treatment plan but your oncologist will discuss this with you. My mask was made of a plastic “netting” material so there was no obstruction of view. there are many side effects that you may experience, some more difficult than others. But the good news is that you will not experience all of them, perhaps only a few, and for many of us, the treatment, although not easy, was not nearly as bad as we had thought it would be. You can do this. post questions as needed and your treatment will be over very soon. Bill

ProustLover

ricksmithgolfer said:

support

I have my wife of 44 years to help me thru this. And yes, my mind is traveling at Warp speed right now. Just got my appoitment for Monday to get my Mask fitted and what ever else they do that day. Thanks for your reply.

You can do this!

Hi golfer - Bebo is right: it's good to understand the possible side effects, but you won't experience all of them.  In April my husband  (of 40 mostly blissful years) finished radiation and chemo for SCC HPV+ tongue cancer which had spread to his neck.  I found this site and did the reading and research, then kind of doled it out to him as things came up. Key advice starting out is to drink loads ofwater and do whatever swallow exerrcises they might suggest.  Read the superthread for product tips like magic mouthwash and aquaphor lotion and liquid supplements. If a feeding PEG Iis suggested, It's not the end of the world and can be a big help. We are now 3 months post treatment and things do improve slowly but surely.  Take care.  You (and your wife) can do this.

dalaitom

My situation was very simliar

My situation was very simliar to yours. It was planned for me to get 35 rads and 3 chemo also. I had a rough time after the 2nd chemo and will not be getting the 3rd due to the fear that the 3rd chemo would damage my kidneys. If I had it to do over, I think I would have asked for the weekly chemo. You must be in pretty good shape for them to suggest the 3 chemos as usually anyone the least bit frail will get the weekly.

I find that listening to the clicks and thumps made by the the radiation machine and then counting the seconds until it ends helped. That way I got to where I knew how long it took and when it would be over as I lay there. If your radiation techs are as good as mine, they'll do everything possible to make you comfortable and they are always very quck to get in there and get the mask off once the treatment is over.

Good luck. You can do this.

bebo12249

dalaitom said:

My situation was very simliar

My situation was very simliar to yours. It was planned for me to get 35 rads and 3 chemo also. I had a rough time after the 2nd chemo and will not be getting the 3rd due to the fear that the 3rd chemo would damage my kidneys. If I had it to do over, I think I would have asked for the weekly chemo. You must be in pretty good shape for them to suggest the 3 chemos as usually anyone the least bit frail will get the weekly.

I find that listening to the clicks and thumps made by the the radiation machine and then counting the seconds until it ends helped. That way I got to where I knew how long it took and when it would be over as I lay there. If your radiation techs are as good as mine, they'll do everything possible to make you comfortable and they are always very quck to get in there and get the mask off once the treatment is over.

Good luck. You can do this.

I was very active at

I was very active at diagnosis and was prescribed weekly cisplatin. I was told that the larger dose/3 times was for patients who lived long distances from the treatment center, to lessen their travel. But my kidneys didn’t like the cisplatin, and I was changed to a 40% dose every other week. The reduced dose concerned me but at 2.5 years I was NED. 

ricksmithgolfer

Mask

Went in for my Mask making today. I was so nerveous and scared I could not believe it.  After taking 1 1-2 mg of Activin I sailed right thru the procedure. All that freten and stuin for nothing. I had really good medical staff helping me out, and my beautiful wife of 44 years rubbing my leg for me to help calm me down.

MarineE5

ricksmithgolfer said:

Mask

Went in for my Mask making today. I was so nerveous and scared I could not believe it.  After taking 1 1-2 mg of Activin I sailed right thru the procedure. All that freten and stuin for nothing. I had really good medical staff helping me out, and my beautiful wife of 44 years rubbing my leg for me to help calm me down.

Rick, 

Glad to hear you got thru today. Great to have support with you as well. You can do this.

My Best to You and Everyone Here

wbcgaruss

You Got This

Glad you made it through with no problems. Many times we think ahead and see things that are not going to happen and worry ourselves over nothing underestimating our strength and resolve. May God Bless you and Strengthen you now for the rest of your treatment journey. I'm with MarineE5 You can do this and you will-Take Care-We're rooting for ya.

johnsonbl

ricksmithgolfer said:

Mask

Went in for my Mask making today. I was so nerveous and scared I could not believe it.  After taking 1 1-2 mg of Activin I sailed right thru the procedure. All that freten and stuin for nothing. I had really good medical staff helping me out, and my beautiful wife of 44 years rubbing my leg for me to help calm me down.

I think you'll find...

That after the first or 2nd treatment on the table that the radiation experience isn't really too much to get worked up about.  You'll get to know your technicians and they'll chit chat with you to get you to relax.  After a time or two you'll just lay there a stare off into space as this giant machine moves around you.  For me, I'd go in, take my shirt off, put my mouth pieces in, lay on the table, they'd put the mask on and line me up.  Then they'd leave and push the magic yellow biohazard button (I always envisioned it looks like a big yellow button with a nuclear symbol on it) and it would start moving around.  10 minutes later they'd come crusing back in, take the mask off and off I'd go.

You'll do fine.  As you said, it's extremely curable so just suffer through and get it over with!  There is a light at the end of the dark crappy tunnel.

Brandon

Pclark21st

Rick, sorry to hear of your

Rick, sorry to hear of your diagnosis.  My bf was Stage 3/4 tonsil with HPV positive.  His tumor so large it restricted airway and needed emergency tracheostomy and feeding tube when he finally went to docs.  He ended having 40 rads and 3 Cisplatins.  It was a tough go but he made it and so will you.  We are 7 months from diagnosis, and 4 months from treatment.  All tubes finally out and he should be going back to work fulltime September 1 A couple of sugestions...get a port, will save your arms. Drink a ton of water everyday to flush the toxins.   Move...exercise everyday, even if a shirt walk to keep active.  Throw the aquafor away...its active ingredient is petroleum...we used Calendula oil, 98% aloe and organic coconut oil...only had a very small red spot from radiation burn.  Do your swallow and jaw exercises religiously.  Have your wife keep a journal of how you are feeling and questions to ask at your next doc visit.  His biggest lingering issue is fatigue but hes coming around each day.  Let people help...you need to concentrate on fighting and your wife on caregiving, let others help mowing lawn, making meals, driving to treatment, cleaning house...whatever they can do to take stress of the both of you...you have enough going on.  You can do this, we are all here to prove that.  Hang tough and breathe.  

OKCnative

Sorry you’ve found yourself

Sorry you’ve found yourself here, but just know it’s simply a slight speed bump for most. I am now one year since treatment started (base of tongue, HPV+, stage 3). I had the same treatment you mentioned and within weeks of treatment ending I was back to 100% pre-treatment condition with only slightly less saliva. You’ll make it, just keep a positive attitude and keep your eye on the prize.

Klingels

Mask etc.

My husband had a hard time at first with the mask as well. By the 5th time he was fine. He would lay and listen to the machine noises. He was always worried about choking on his saliva with the mouthpiece and mask so he would always clear his mouth out well before radiation.

With 20/20 hindsight, he and I think he should have done the weekly Cisplatin as opposed to the 3 big doses. I think he might have had an easier time. He was 55 at the time of treatment. He is now one year out from treatment and doing well.

ricksmithgolfer

Pclark21st said:

Rick, sorry to hear of your

Rick, sorry to hear of your diagnosis.  My bf was Stage 3/4 tonsil with HPV positive.  His tumor so large it restricted airway and needed emergency tracheostomy and feeding tube when he finally went to docs.  He ended having 40 rads and 3 Cisplatins.  It was a tough go but he made it and so will you.  We are 7 months from diagnosis, and 4 months from treatment.  All tubes finally out and he should be going back to work fulltime September 1 A couple of sugestions...get a port, will save your arms. Drink a ton of water everyday to flush the toxins.   Move...exercise everyday, even if a shirt walk to keep active.  Throw the aquafor away...its active ingredient is petroleum...we used Calendula oil, 98% aloe and organic coconut oil...only had a very small red spot from radiation burn.  Do your swallow and jaw exercises religiously.  Have your wife keep a journal of how you are feeling and questions to ask at your next doc visit.  His biggest lingering issue is fatigue but hes coming around each day.  Let people help...you need to concentrate on fighting and your wife on caregiving, let others help mowing lawn, making meals, driving to treatment, cleaning house...whatever they can do to take stress of the both of you...you have enough going on.  You can do this, we are all here to prove that.  Hang tough and breathe.  

Jaw excercises

Thanks for your input. How is your boyfriends jaw doing as far as him being able to open it all the way? I'm seriously thinking about buying a Thermbite exerciser for the jaw. They are proven to do a much better job at opening the mouth further than just the regular exercises given by the therapists. Already got my Calendula oil, Aloe Vera and coconut oil as you suggested. Looks like I will be starting treatment sometime next week. Really scared but I think I am ready.

Also, how did you apply the different products to the radiated area. Did you put one on say in the morning and a different one on later in the day and then another one at night. I assume you did not put on all 3 at the same time.

ricksmithgolfer

OKCnative said:

Sorry you’ve found yourself

Sorry you’ve found yourself here, but just know it’s simply a slight speed bump for most. I am now one year since treatment started (base of tongue, HPV+, stage 3). I had the same treatment you mentioned and within weeks of treatment ending I was back to 100% pre-treatment condition with only slightly less saliva. You’ll make it, just keep a positive attitude and keep your eye on the prize.

any jaw opening issues

Thanks for your reply. Should be starting treatment next week. Waiting for radiation oncologist to finish up the mapping for my treatment. Chemo is already set for next week. Have been reading quite alot about Trismus of the jaw/mandible. Are you doing all the excercises that the speech/swallow techs have taught you? I have read alot about a devise called the Therabite which has shown in studies to be much more effective then just the regular manual excercies. Studies show if you start all the exercises at the beginning of treatment your chances of developing Trismus or other jaw issues are much less likely. Any thoughts?

AnotherSurvivor

Didn't know about the

Didn't know about the reclassification.  My wife and I disagreed on whether I was II or III or IV (T3, N1, M0)  I always knew I was a II, glad medicine finally agreed.  The next 8 - 10 weeks will be tough, but your odds are very good (you will see a range of numbers from the 80% to +95%.  Best evidence is those are made up on the fly, the reality is your odds are pretty good).  Eat now, you will lose weight, even if they do a tube.   

I am 65, did 35 rad/6 carbol-taxol.  The effects of treatment tend to be backend loaded.  The first two weeks I was wondering when the sucky part started.  Weeks 5, 6, and 7 were in a wheelchair on oxygen, but it was from side effects (embolisms).  Get a couple of the forehead reading digital thermometers, do a couple of readings a day.  Also, your wife should have a notebook in which she records all vitals, all names and phone numbers.  She is now in charge, including doing the driving.    Mine hung a loud soccer referee whistle on me, it made her feel better.  I bounched back very quickly when treatment ended. Yes, your taste will come back, at least partially, but it takes its own time.

  Look in to portable phlemgh suction pumps.  Your med team should be able to give you a prescription for a rental.  Know that the infusion center where you get chemo also probably does saline drip.  I ended up getting saline every day from week 3 onward.  It helped a lot.  It also helps your nurses keep a watch on you, which literally saved my life when the side effects kicked in.  This is a very good site for any questions.  Your wife is also very welcome, she will probably be wondering how to get calories in to you.

At 18 months post my ENT just said I'm still clean, see him again in 4 months.  I feel very good, lead a normal life with new lower weight, and most old bad habits.   I still see continuing small improvement on things like taste, dry mouth, so never give up hope.

ncjenn

Husband Going Through It Too

My husband was diagnosed with HPV+ tonsil cancer back in March of this year.  He had a radical tonsilectomy to remove the left tonsil and surrounding tissue.  Also has a modified radical neck dissection where 2 of the 65 nodes were positive.  One node showed perinodal extension so he is now undergoing radiation.  He did treatment #18 today out of a total of 30.  No chemo.  We are still trying to get his Therabite device (have had an issue with insurance) so for now he is just doing what the theapist has told him to do.  This is a tough road for sure but he's getting through it one day at a time.  You will too!  Hang in there.

KB56

ask your oncologist about Erbitux vs Cisplatin

Rick, similar situation for me 5 years ago and today I'm doing great and back to as close to normal as possible.       The treatment is rough, the raditiation was really tough but my chemo was not too bad.   I had Erbitux vs Cisplatin, and many of us on this site had Erbitux as well.   the side effects are much more tolerable (bad skin rash/acne was the side effect i had) and much easier to deal with.

I asked my oncologist a few years ago why Erbitux vs Cisplatin and he said he thought Erbitux would work well for me and that's what he went with.     I would definitely ask the question for sure.

Mine started in my right tonsil as well and I did not have a neck dissection as they said my cancer was wrapped around so many critical things in the neck they felt that it was too risky and felt the chemo and radiation would take care of it.  So far so good.

 

Good luck!

Kskokko

Mask

the mask horrified me.   I was doped up the first few arcs, then I faced it without.   I brought a Bluetooth speaker and played my music loudly.    mostly it was Ella Fitzgerald that kept me company.   Each scan became an opportunity to expose the techs to real music.   Ella, the Duke, the Count.   Jimmy Rushing, Sarah Vaughn.  Sam Cooke.  Billie Holiday. Leadbelly.    Just concentrating on the voices to comfort me.    Maybe the techs learned something