Log in or Register to participate in these discussions

HPV+ Throat Cancer: What to Expect in Treatment

HPV+ Throat Cancer: What to Expect in Treatment

Posted by Will Dove on Aug 18, 2016 4:00 pm

As I am now 3 weeks post treatment for a stage 4 HPV positive tumor in the base of my tongue, and, as I know from experience that the doctors will definitely not tell you everything, I thought I would write this post to help others who have been diagnosed know what to expect while going through treatment.

There will be variations in treatment but some things are guaranteed.

1. You may or may not have surgery. My tumor was inoperable so I cannot help in that area. If others reading this had surgery please feel free to comment.

2. You will definitely have radiation and there will be some severe side effects. I will cover these below.

3. You will probably have chemo. If you are HPV+ like me it will likely be Cisplatin. Again, side effects covered below.

PRE TREATMENT: Head and Neck Cancers are touchy beasts, requiring a lot of prep on the part of your medical team. My wife was diagnosed with breast cancer 5 years ago and was in treatment 9 days after diagnosis. This will not happen nearly as fast for you. There is a lot of prep that must be done. You will have many appointments and tests during this time. Expect 6 to 8 weeks from diagnosis until the start of treatment. The doctors are not trivializing your condition or ignoring you. It's just how it is. Use this time to prepare and unless you are overweight pack on some pounds and revel in your food. You're going to lose weight during treatment and you are going to completely lose your sense of taste for several months at least. I am not kidding. Everything will taste like cardboard.

TREATMENT SCHEDULE: Treatment will likely be 30 to 33 daily radiation treatments combined with chemo. For HPV+ the radiation is the magic bullet. Chemo will weaken the cancer but cannot kill it. The chemo should increase your survival odds by about 10%. You will have 2 to 3 rounds of chemo 3 weeks apart, or (less commonly) you will have daily low dose chemo.

RADIATION: Expect the following: You will be treated daily (weekdays only, of course). Each treatment will take about 10 minutes. Your throat and neck will begin to get sore within 1 to 3 weeks. You will be told to use a cream on the outside of your neck to keep it moisturized. Use it liberally starting several days before treatment. You will start to lose your sense of taste by the end of the first week and it will be completely gone by week 3 or 4. (Most people eventually recover about 80% of their sense of taste but this will take months post-treatment and possibly years). You will be given pain meds for sore throat and will likely end up on morphine for at least a few weeks. By the end of treatment you will have severe radiation burns on both the outside of your neck and in your throat. Very few people are still able to swallow at this point and some will end up with open sores on the outside requiring sterile dressings.

By the 2nd  or 3rd  week you will begin to develop what the doctors refer to as ‘thick, ropy, saliva’. Bwa Ha Ha Ha! It’s phlegm, folks. Your mouth will be full of phlegm. So much so that most people find themselves choking on it. It will get worse toward the end of treatment as the lining of your throat responds to radiation burns by producing even more phlegm, which you will definitely find yourself choking on. Most people find that they are awakened several times per night choking on phlegm and must get up to clear it. Some people vomit from it. If you are still eating when the phlegm production starts all food will have no taste but everything you put in your mouth will be like chewing a ball of phlegm - as disgusting as it sounds. This will continue until several weeks to a few months after treatment. In addition, the inside of your mouth will be numb during this time.

You will likely go through a period starting in late treatment where you must sleep inclined or even sitting straight up (yep, pretty uncomfortable and you will not get a good rest but it may be the only way to sleep without choking). A vaporizer may help.

Eventually the phlegm production will ease in favor of dry mouth. You will need to learn to sleep with your mouth closed (some people have to tape it closed) or your mouth will dry out within minutes. Eating will require having some sort of fluid at hand to wash food down with. This will also continue for many months and many people find that they will suffer from some dry mouth for the rest of their lives although for most it eventually becomes tolerable.

The end of treatment does not mean recovery starts, either. Expect the side effects of radiation to worsen for two weeks following the end of treatment before it starts to get better.

On a minor note, if you are a guy, your beard will stop growing everywhere that you've received radiation. It will come back in time.

CHEMO: Expect the following: Your first chemo will be on day one or two of treatment. If Cisplatin, expect severe nausea even with the meds they will give you. Of the hundred or so different chemo drugs, Cisplatin is one of the nastiest in terms of side effects. The nausea will likely not start until the next day but it will be very bad when it does. Nausea will last for one to three weeks on each treatment depending on how sensitive you are to it (one week is normal but I was very sensitive so for me it was almost 3 weeks). Eat as much as you can between the end of nausea and the next chemo treatment. You will need all the calories you can get. Your hair will thin but not fall out. You may also experience severe fatigue and find that you are sleeping A LOT, especially for the first few days post chemo.

GENERAL TREATMENT NOTES: You may have a feeding tube put in anywhere from week 3 to week 5, which is a small tube that snakes through your nose and down in to your stomach so you can have liquid nutrition. This will happen if you can no longer eat, which is very common. You will lose weight, possibly a LOT of weight (I dropped 30 lbs. and I was very fit and very lean when I started so that was 30 lbs. of solid muscle). Unless you are overweight you should eat as much as you can prior to treatment. If you can pack on 10 lbs, do so. You'll lose it again, I promise.

You will experience fatigue, possibly extreme. Give up all ideas that you will continue to work or have a normal life while going through treatment. This will not happen. You will be sick, weak and tired, and this will last for months.

DEPRESSION, the most common side effect: Also, the most common side effect of throat cancer treatment is depression. Virtually all patients will suffer from at least some depression, and in some cases it will be severe. Be prepared for this. Let your friends and family know and make sure they understand you will be experiencing some very low moments. Suicidal thoughts are normal (although thankfully I've never heard of anyone acting on them).

If you are married, be sure your spouse is prepared for being a care giver and for providing emotional support (have them read this post). If you do not have a spouse or live-in caregiver you must arrange in advance for someone to check on you regularly. You may experience times when the only thing you have energy for is getting up long enough to go to the bathroom. You will not be fixing food for yourself or fetching a drink from the fridge during these periods. Also, remember the depression and be sure you have someone to talk to. You will need this support.

Doctors and nurses will be kind and supportive but remember that they have never experienced what you are about to go through. You will at times find yourself frustrated as they simply don't understand the level of discomfort, pain and distress you are feeling and they will be ‘preaching’ at you to do certain things. Nod politely and then do whatever works for you.

There will be times, especially during the early weeks of treatment that you will wonder if the torture is ever going to end. You will find yourself grimly hanging on and simply enduring the suffering that each day brings. This is the cost of survival. Be prepared for it as for most of us, this will be by far the worst thing we have ever, or will ever, experience. It's that bad. Really.

I have a good friend who is a radiation tech at the cancer center here. He has treated all types of cancers for years. While there are certainly other cancers with lower survival odds, he told me that of all the cancers you can get, throat cancer is the one he would least want because the treatment is the roughest of any kind of cancer.

Please note that while this post is based upon my own personal experience and a lot of research in to what other patients have gone through, everyone responds differently. This post is a guideline. Your personal experience my differ somewhat but in general the above is what you will go through.

If you have questions, please post them and I'll get back to you as soon as I can.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Lacey_adminCCS on Aug 21, 2016 11:40 am

Will Dove-Such a detailed account of your situation. I have some personal family experience with stage 4 tongue cancer (not HPV) and can atest to so much of what you said. This is valuable info for someone who really wants to know what to expect. Even though everyone is different it's nice to have some inside information.

how long post treatment are you?

Lacey

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Will Dove on Nov 2, 2016 9:40 pm

My treatment finished at the end of July, 2016, so I am currently 3 months post treatment. I still have very little sense of taste and extreme dry mouth. My teeth are still very sensitive to temperature although that is gradually improving.

Due to being an extreme fitness nut I am otherwise recovered and back to working a full day, however I am unusual in that regard. I have met people who are 1 year post treatment and still can't work more than 4 hours a day.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Calvin on Aug 13, 2017 2:06 pm

Will I was finally able to open your comments thank you for the insight, it's going to be a battle but a war I will win. 

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Lacey_adminCCS on Aug 14, 2017 11:43 am

Glad you were able to read Will's posts Calvin‍ ! He is pretty inspiring and has provided great detailed information.

You have a great postive attitude that will take you far! I would also like to introduce you to Doug‍. 

what is currently happening treatment wise?
Please lean on us as needed,

Lacey

 

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by nimo on Jan 16, 2018 1:14 pm

anyone out there who did radiation only and not the cisplatin?  I had cancer in left tonsil - removed - but have at least 2 nodes in the neck tesed positive for squameous cell.  Thinking of not doing the chemo.....

Re: HPV+ Throat Cancer: Anyone Radiation no chemo?

Posted by Lacey_adminCCS on Jan 17, 2018 4:53 pm

Welcome nimo‍ 

Glad you found us and jumped right in with your question that is great! 

What treatment plan has your Oncologist recommended? Your Oncologist is the best person to help you make an informed decision carefully weighing your options and what works best for you. They should be able to give you an idea what your prognosis is with and without Chemotherapy.

We are here to listen and support you along the way! 

Take Care,
Lacey



 

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by ssharpie on Apr 9, 2018 8:53 pm

Thanks Will and Lacey. Just finished up my radiation for HPV related throat and lymph node cancer. I can relate to pretty much all of your symptoms as I am going through the same. Doctors don’t tell you all that good stuff so it’s nice to hear someone confirm and it gives me hope. I think the hardest for me is there’s no pill, product or behavior that can speed up the process. We just need to be patient, try to eat and eventually exercise to get stronger. Again, thanks for the post. Steve

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Lacey_adminCCS on Apr 9, 2018 9:09 pm

You will get there ssharpie‍! You're amongst friends here slow and steady wins the race. 

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by StacyH on Jun 2, 2018 8:03 pm

Hi I am now 3 months post treatment and I can attest to everything Will has said. I still have what I call a spur in my throat that is very sharp when my throat dries out and food tastes so bad I get physically sick ( strong cardboard taste). I had a feeding tube put in during week 6 of treatment it was removed 2 weeks ago I'm taking 6 Ensures a day until my taste comes back. Has anyone else experienced the spur and bad taste? If so how long did it last?
Thanks for all the posts they really help me get through this.

Stacy Hanson

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Bubbav on Jun 19, 2018 2:04 am

I'm new to this site, I have throat cancer, I found out this year on January 9th, the cancer was caused by hpv, the cancer is behind my right tonsil...I'm in stage 4, I have completed radiation about two months now and I was doing chemo but I lost all my weight and got down to 82lbs ,so the dr. Stopped the chemo treatments, I did have two treatments and i was scheduled for four chemo treatments....ive had a feeding tube in every since I was told I had cancer.....if anyone has been in my shoes, can you please give me some information on how to gain weight while on feeding tube and what to expect next....thank you for taking your time and reading my story of my life right now

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Brighty on Jun 19, 2018 7:16 am

Bubbav‍ welcome to the site.  Sorry to hear of your diagnoses.   You came to the right place.  There are a few others here I would like you to meet.  Garth HRedcarJamesT‍  and Iluvny‍  have experience  with this.   My fiance was also on a feeding tube for almost a year.  Are u able to get anything down by mouth? If not.. the best way I can suggest is to keep putting as many shakes into your  feeding tube as possible.    Some of them have more calories  than others.   Resource  is one of them.. it has high in calories.   Your dietician  will also be able to tell you what to put in the tube that is high in calories  so you can out on some weight.    We are here to listen aND help you through  this difficult  time.   I'm sure the others will respond  with their suggestions.   Hope this helps!!!

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Iluvny on Jun 19, 2018 12:32 pm

Bubbav‍ v my husband was diagnosed in January as well, with cancer on right tonsil and one lymph node, caused by hpv. He did 35 radiation treatments , and was to do 6 cisplatin but only did one , due to his hearing being affected. They then gave him cetuximab for the remaining 5 chemo doses. Finished April 13. He does not have a feeding tube but has lost 14% of his body weight and has a very hard time getting nutrients in, even liquid. One thing I can tell you is that we found s way to have almost 1200 cals in one drink, by using Scandishake ( a package that you mix with full fat milk-bought at Shoppers Drug Mart Pharmacy, they had to special order it ) and adding 2 scoops of weight gain protein powder , that we bought from a Popeyes Supplements. He could only drink that once or twice, it was too thick for him and he was so nauseous that it grossed him out . But I wonder if you could put that in your feeding tube

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by ypsimac on Jul 4, 2018 5:09 pm

I finish my seven weeks in April and was very fortunate to only need morphine for one week. Worst side effect from chemo was a nasty rash everywhere on my body.  I was lucky to be able to get food down for the whole treatment as I had very few sores, over the counter worked for most of my treatment.  The worst part for me is the dry mouth. It is always there and makes the eating all the more difficult. I am now in week 7 after the end of treatments and just this week develop the worst of any of the ulcers, kinda disappointing after doing so well. I also have begun to experience some sleep apnea which is little scary and has set me back on work and exercise.  I think of all the things that got me through the treatment, the three most important was doing the mouth, throat, and tongue exercises, constantly using the the salt soda rinse and getting out side to do some walking with my dog. Also eating, whether I liked it or not. On Friday I have my 3 month scan and I am bit excited but anxious.  I wish everyone who has or is about to go through this treatment the best of luck and to try to stay as positive as possible, I think it helps.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Lacey_adminCCS on Jul 4, 2018 5:36 pm

ypsimac‍ 

Welcome to the community. Thank you for sharing your experience with recovery 7 weeks in. Best of luck with the symptoms your experiencing and fingers crossed for a clear scan.

Where did you have your treatment?

Lacey

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by ypsimac on Jul 4, 2018 9:33 pm

Hi Lacey,

I had my treatment at the University of Michigan comprehensive cancer center in Ann Arbor, MI.  I live about a mile from the center, so I was very fortunate to be able to get to my treatment in a very short time and be home very quickly.  I really appreciate the blog and hope that others may get the support they need to successfully navigate their treatments. It has some of the more unique and heartbreaking side effects in the world of cancer. Support from those who have experienced is essential for those who are just beginning their journey.  
Thanks for your thoughts and hope for my upcoming scan, I hope that you and all who have to face the specter of cancer of any kind, may find their way to positive results.
Take care,
Jim

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by JamesT on Jul 4, 2018 9:41 pm

Hello ypsimac,

You were very fortunate you only needed morphine for 1 week.  I went through the chemo and radiation and finished last September.  

I certainly needed the morphine pills to help with the pain.  And while the pain was bad in my throat and surrounding area, the most painful was a very nasty canker sore on the side of my tongue.  This started very early in the treatments and just got worse and worse....

Was so thankful once everything was done and the healing started.

The salt soda rinse must be so painful.  I had to stop those early in the process.  Was only able to do the medicated rinse that was developed by the pharmacy at the hospital.

I remember I was feeling anxious as well pre - pet scan.  While it's not 100% guaranteed, you are through the worst and the probability is very very high that the cancer is gone.  It will be great once you receive that confirmation.

yes staying positive does help.

I also had trouble sleeping as well....I'm up reading quite a few times during the night...and i can't get out of bed early in the morning...it's more like 9:30  to 10:00am.  

I'm 9 months post now and still a very dry mouth....so looking forward to getting back to normal.  Hopeful this is not the new normal, but if it is...it is.

Sincerely,


James

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by BS123 on Jul 29, 2018 12:13 am

Good advice. i am 4 month after treatment for hpv on tonsil. 33 radiation and 7 chemo. i came through it very well. effects seems to vary. i find the healing much worse than the treatment. i expected to be sick form the chemo but it was mainly naussia. lost 90 pounds, 280 to 190. just now able to eat bread again. experiment with the foods, moist stuff. i have a feeding tube but don't use it now. trying to stableize my weight to get it removed. 2 pieces of advice, get a porta-cath put in, and a feediing tube, and do what they tell you. i was stuborn. There is hope, take the eds, especially pain killers. you may not use them everyday but once in a while youll be glad you go them. my pet scan was can so i was blessed, lucky. youll meet people far wose off than you. stay upbeat if you  can.. . .  

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by JamesT on Jul 30, 2018 12:16 am

Hello BS123‍ 

congrats on your clear pet scan.

Thankfully I was able to get through without a feeding tube....but if I had to get one I would have.

I just had my 9 month check up this past week.  Everything looks good.

But surprisingly enough I can still feel where my swallowing food is not at 100%.  I don't have any pain with foods, but I can still feel it.  The recovery is a long one.  I actually get worried it will come back.

How did you know you had a potential issue in the beginning?  For myself it was a lymph node on my neck that started protruding...and that eventual led to a biopsy and results that showed it was cancer.  Then a scope in my throat food the primary cancer which was my right tonsil.  And I never felt anything in my throat.

Sincerely,


James

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by ypsimac on Aug 14, 2018 8:05 am

I had a prolonged swollen lymph node also. They never did find the original source, but told me that was not unusual and that treatment course would be pretty much the same. Had some ups and downs since my last note. Another throat ulcer, which has resolved itself and the latest is breaking out in a nasty rash. It is in the same areas that I broke out with during a chemo reaction. Never had trouble with a rash before in my life!  All in all, still very thankful and looking to improve a little every week. Glad for the news of your clear scan. Continued good health to all!
Jim

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by DaveClauser on Sep 20, 2018 9:10 pm

Will Dove‍ 

Thank you for putting the treatment into words.  I tried several times to put my chemo and radiation treatment into words but simply could not describe how horrid the treatment was.  You are correct that anyone who has not endured the treatment simply cannot comprehend how horrid it is.

I turned 63 last August and my cancer was discovered in February 2018 during a routine physical as a lump on the right side of my neck.  After all the tests it was a tumor (HPV-16 positive) in one lymp node. The primary origin was never found and my doctors say it most likely started in the base of my tongue and my body killed the primary origin.  My tumor was removed in March and I was able to get through the treatment without a feeding tube and a minimal amount of painkillers.  I did put on some extra weight before treatment but I lost 40 pounds during the treatment.

.My adult children told me at the start of the treatment that I am one tough guy and that I would be fine.  They were correct but the treatment took me to my knees even though I have always had a high pain tolerance and level of mental toughness.

I am 4 months out from the end of the treatment and things are getting better but my taste and saliva production has along way to go.  My PET scan the end of July was clean and the doctors are confident I am cured but there is no guarantee.  I am moving forward with my life and enjoying being am back on golf course and enjoying my other activities again.

While things are getting better everyday, I have trouble talking to people about the treatment as it is just too painful to talk about.

To sum things up, at a follow-up visit with my surgeon after my treatment, I asked him how he thought I was doing and his response was "considering we tried to kill you with the cure you are doing better than most".

All I can say is we are survivors!


 

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Lianne_adminCCS on Sep 21, 2018 12:28 pm

Thank you for sharing DaveClauser‍ . Good to hear that things are getting better and that your PET scan was clean. None of us have any guarantees so glad to hear you are back to golfing and other things you enjoy.

Your post will not doubt help someone else who is just starting out on a similar path

Have a great weekend

Lianne

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Will Dove on Sep 21, 2018 4:45 pm

Hey DaveClauser‍, thanks for sharing your experience. I'm glad you're recovering well. I've met many people who went through this treatment never to be the same again. Fitness nut that I am it took me almost two years to recover fully (or at least as fully as I'm going to - I'll have dry mouth for the rest of my life and I can't taste sweet things very well).

But, we're alive and we survived it. The strong ones will come out better people for the experience. I sense you are one of those. 

Cheers,
Will

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by DaveClauser on Sep 23, 2018 8:55 pm

Will Dove‍ 

Thank you for your kind words.

Once my son read your write-up of the treatment, he realized just how rough the treatment was and what I went through.

Without my wife's help I do not know how I would have made it through the treatment.  When she read your write-up she said it was very accurate as it could get.

My Treatment

I had 2 cisplatin treatments.  They did not do the 3rd dose as the 2nd dose almost did me in.  A week after the second treatment I became very dehydrated and passed out when they were taking a blood sample.  I spent 2 days in the hospital getting stabilized.  I had 27 radiation treatments that ended May 16th.

I feel my recovery did not start until Memorial Day weekend.

As stated earlier my taste and saliva production is slowly coming back.  I hope the pace of their return speeds up but it will be what it will be.

Question

I lost about 25 pounds of muscle mass from my arms, legs and chest.   My weight has been stable for about 2 months and I am trying to get this muscle mass back.  I am exercising more (low weights and cardio-exercise) and now I am having trouble maintaining my weight because I just cannot eat as much food as I did prior to treatment. I watch my calorie and protein intake to make sure I eating enough.

Do you have any advice how I go about replacing this lost muscle mass or am I just expecting too much too soon?

Just looking forward to many good days ahead.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Dthielen on Sep 24, 2018 6:29 am

I finished Radiation on Aug 5, first followup was Sept 5, I am pretty sure the doc wanted to wait that month because he knew that if he saw me sooner than that I would have killed him because of how bad those three weeks at the end of radiation were. I was a nice deep beet purple from the radiation burns and my range of motion for my head could have been measured in millimeters for about a week. I went through  three tubes and bottles of the cream they recommend in that week. Finally that upper layer of burn peeled off and I was able to move again.

I was on 2mg of hydromorphine every four hours but it wasn't doing anything, and the doc said take as much as you need. well I needed 8 mg to get a single ensure down. At that point, the ensure burned just as bad as the radiation, and it tasted like hell. Every swallow of Ensure had to be washed down with lots of water to get both the taste and the burn down.   

I am still weak - which is to be expected after losing 70 pounds in only two months and I don't like picking up my 3 month old son because I have a real fear of dropping him. 

Now the good stuff - yes Virginia there is good stuff. First is that my family doc is surprised at how well I have handled it all. I put that down to years in the military and learning you don't have to like it, but you do have to do it. From diagnoses last February till now I am down 90 pounds. 70 of that came off between June 15 when radiation started and now. I can actually bend over and tie my boots without it being a struggle. I'm down to a 30 inch pants, something I haven't fit into since high school and I'm 64. Prior to treatment I was on 2500 mg of Metformin, plus two gliclazide, for my blood sugars. I am now off of them entirely. I was on three different blood pressure medicines, and still blood pressure was 140/100. Now off of all my blood pressure pills and I'm running at 120/80. From18 pills a day, I am down to 2. One for acid reflux, and one for prostrate. Which is the next possible sour note, because my PSA is where they suspect I may have prostrate cancer now. But I'm not doing anything about that until after my PET Scan which is scheduled for November. 

They pulled all my teeth prior to treatment - and that is when I lost my taste, well before radiation even started. But it is now pretty much all back, and while I am still getting most of my nutrition from Ensure, I actually was able to ENJOY yesterdays roast beef dinner it seems all of my taste is back.  But it is a real pain to eat real food - even soft. It feels like taking sandpaper to the roof of my mouth and to my throat. However I can taste it. We joked at the start, (when they took my teeth and told me I had to go at least six months with no teeth before I could go in for dentures) that my little guy and I would be learning to eat solid foods together. And although he is just over 4 months old he has his first tooth and with the help of a hand blender smooshing it all up - he had the same roast beef dinner I did. 
 

Share with your friends: