Base of Tongue Cancer

Hi there,

First of all, what a relilef to get such a good result from the PET scan, and I am most impressed that your husband is back at work.  I am nearly five yoers past the end of my treatment and I am still suffering from fatigue, so I am really pleased for him.

It does sound as if he came through his treatment relatively lightly in terms of the side effects, and the ones he still has will definitely eas as time goes by.  It is pretty normal for the mucus to last for a few months, and personally I found that it lasted till the following spring (9 months post ttreatment), over which time it tapered off continually until it wasn't bothering me at all.  Strangely, it seems to come back a little each winter, but it is easier each year.

My dry mouth is still improving, even though my consultant told me that all improvements would have happened by two years after treatment.  It has vastly improved since that time, which was a very pleasant surprise for me and a salutory lesson in the accuracy of projected timescales - they can only ever be approximate, and whatever figure you hear, always remember that there will be people whose experience falls on either side of that line, sometimes by quite a long way.

One of our forum members recently found that her taste suddnly reappeared about 18 months after her treatment, so hang on in there!  We have no way of telling how long our bodies are going to take to heal from this battering, but they are remarkable in their ability to do so.

Definitely keep on at your daughter - the problem with cervical cancer is that it can be very advanced by the time it is detected, simply because it is 'invisible', unlike most of the head and neck cancers where there are noticeable symptoms, even if they are misdiagnosed at first. 

As to the vaccine for boys, I believe it is the same as the vaccine for girls, and the only reason I can see for it not being universally administered is cost.  I know there is some publicity against it, but I am going to be a bit controversial here and say that in the grand scheme of things, it is better (though 'better' is the wrong word) for a very small number of people to possibly be affected by the vaccine, than it is to have a large number of people develop an entirely preventable cancer, the treatment for which affects them for the rest of their lives.  I have the greatest sympathy for anyone who is damaged by a vaccination, but on balance I feel that having it is much more likely to save you from this horrible disease, than it is to cause you any other problems.

Best wishes,

Josie

Hello Younpa

I too have recovered from base of tongue cancer and tonsil cancer ...I finished treatment not quite a year ago.

Yes it was tough, yes it laid me low and I lost loads of weight... Yes I had to have two of my beloved teeth removed....NO I didnt have a PEG or a N/G tube fitted....But I got through it as you will and I am almost back to normal

My diagnosis was also a huge shock...I have never smoked and I dont drink...I am vegetarian and nearly always eat organic...so why me I thought. It was diagnosed as an HPV16 viral cancer...sexually transmitted they told me...but only one partner...so that wasnt nice to learn...except I have since found out that there are many ways it can be transmitted so that has reassured me somewhat.

I had treatment in France so things were a bit different...very luxurious and very person orientated so the stress was minimal as things are sort of private here. I saw my consultant whenever I had a question he would arrange to see me. That was reassuring. I didnt have a feeding tube as it is not done here unless there are severe issues with eating...so I kept eating and swallowing all the way through. It was hard at times but I think it helped my recovery after.

I lost a lot of weight, and the team have encouraged me not to put it back on...I went from a size 14 down to a size 8. They say they have noticed that people who put weight on are more inclined to have a reoccurance...I like the new skinny me so to celebrate I bought new skinny clothes. That heped my moral enormously.

Now a year down the road I am thinking about some bridge work with a dentist who specialises in people with problems like mine, I am almost back to normal eating wise...although as I dont eat meat I dont suffer the sam issues with it as others....I still dont drink...I was advised not to. I do manage to go out for a meal now and then...although I usually only manage a starter...I am cheaper to keep. LOL...I never had much of a problem with mucus, although during the chemotherapy and the six weeks radiotherapy I was very very sick...it soon passed when the treatment stopped

So you see there is life after...just be patient, take it one day at a time, count the days, and please above all FINISH the treatment, so many people dont. Each radiotherapy is only a few minutes, ....breathe and relax...you will get through it like so many people on here have....My daughter used to ring ke every morning before I left in the taxi to tell me that once todays treatment was over there would only be so many treatments left, or only two Tuesdays left...it was a real encourage ment to know that somebody was thinking about me

Good luck...and above all stay strong and fight to win

Hi Josie, thanks for your reply & reasuring words, I have forwarded it to my husband. I just got in from work & he has shown me a BBC artical stating they are going to offer a vaccination for ‘gay men’ for the HPV virus.He’s fuming as the article makes it look like only homersexuals can get the virus when we know this isn’t true. I am going to email them & give them my thoughts. 

Thank you for uplifting message Carol. I may message you with questions if that's ok.

Paul

I'm very happy to answer any questions, now and along the way. Sending lots of positive thoughts to you.

Best wishes from Carol

HI!  I come back and check these message boards every now and then for the sole purpose of giving folks like you some encouraging news!  My husband was diagnosed with a cancer like yours this past September.  Stage IV Squamous Cell Carcinoma Base of Tongue with spread to the Lymph nodes on one side.  His was HPV+ also.  Treatment was 8 Erbitux treatments and 35 radiation treatments.  We were in SHOCK and terrified of this diagnosis and treatment plan.  While I appreciated reading everyone's experiences and stories, the general theme was just scary.  I did find a few positive stories/outcomes that helped so I made a promise to myself to do that for others if I could.

Anyway, my husband is now 3 months past his last treatment and is doing GREAT!!  He has a slight dry mouth sometimes, but is back to eating EVERYTHING!  He made the choice to not get a PEG tube.  The doctor wanted to put one in 2 weeks before treatment started.  Even though they said he wouldn't need it until week 3 or 4. I thought getting a tube in his stomach 5 weeks before needing it there seemed crazy so we met with the doctor who would place the tube and he told us he could put a tube into anybody at anytime.  So, we opted for no tube with the idea that we could get one placed if necessary.  It never became necessary for us.  Yes, there were a rough few weeks were my husband was on a liquid diet, but he always had enough calories thanks to these two items.  Ensure Enlive (350 calories in the 8oz drink) and Benecalorie (330 calories in a little tablespoon or two).  Both are available on Amazon!  We found that, as long as he could keep the calories up...he did okay.  I'd mix a benecalorie into the Ensure and he'd get that down in a few swallows.  I also made healthy smoothies each day with probiotics, protein, raw foods, etc.  Let me know if you want my recipes!  

Maybe my husband was lucky...but he never experienced the awful pain that some others go through.  He did not take anything beyond Advil.  He had a week or so of some gnarly phlegm and a few weeks of some pretty intense neck burns but all that passed.  Everyone will experience the side effects differently so it is hard to predict how yours will go.  But, I firmly believe that my husband did okay because he kept his calories up and had the daily dose of healthy food (smoothie) to keep his body going.

Anyway, CT scan at 8 weeks post looked good, and we have a follow-up PET scan in March. Praying for good results!  I just wanted to let you know that this treatment, although intense there for a few weeks, is DO-ABLE and life can get back to normal! 

You can do this!!

Wow that is very encouraging, I'm about to have 6 teeth removed tomorrow before my 6 weeks radiotherapy and chemotherapy commence and I am very anxious.

I would like any recipes you have used for your husband please.

I'm dreading treatment and pray my side effects are not dreadful and listening to you I have more hope now so thankyou

I still feel this isn't really happening and my emotions are all over the place, it's scary.

Sam

Sam, we felt the same as you in the beginning!  Totally normal!  I think my husband felt better once the treatment started. It felt good to start the fight against the cancer.   My husbands daily smoothie was this:

1 organic banana

1/4 cup frozen organic blueberries

1 cup organic Almond (or cashew....I used cashew when I could because it had higher calories) milk.  

1 little container of Benecalorie (from Amazon)

1 container vanilla yogurt (we used brown cow brand because it had 150 calories)

1 scoop vanilla Orgain Protein powder/superfood mix (I got mine from Costco in the US).

This smoothie was about 780 calories with the above ingredients.  I'd throw it all in a Nutribullet or Vitamix blender and it was really good!  You can play with the amount of non-dairy milk and/or ice to get the consistency how you like it.  If wanted to add extra easy calories, I'd add some honey and/or heavy whipping cream as I think they are each 50 calories per tablespoon.  I also played around with putting in different fruits (strawberries, peaches., in place of the blueberries). It was always good. 

Congrats to your hubby.

Did he get a "T" number for the cancer stage? Although I don't want to be a downer on this and it is of course great news for you *both*, I would like to add that as we are all different the side-effects will vary due partly to how severe the cancer is, our own health and the incidental damage caused by the beam/target area.

In my case I had a PEG before treatment of a T4N2M0 "base of tongue" cancer and it was a good job I had it. I started treatment in Oct'16 2 Chemo then 35 fractions of RT, on Xmas day I couldn't eat any treats and *had* to use the PEG for several weeks. My neck was very burnt and I started to wear a bandage/necktie to soak up the ooze. I was on very strong painkillers at this time and had some very dark days.

As said well done to hubby, however for others out there sometimes the treatment can be horrendous.

My good news is that I've been scanned and I'm clear (Wahoo) although I still have problems with saliva.

Best

Chris

Chris, congrats on the clear scan!!! 

You are right, I probably did not emphasize enough that treatment effects will vary greatly! My main point was to be a glimmer of hope for people just starting out.  Yes, it could all be downright awful...which is the experiences we mostly read about when my husband first got diagnosed.  I wanted to point out that it isn't always worst case scenario regarding the side effects of treatment.  There is a definitely a range.  Be prepared for the worst, but hope for the best, I guess.:)

I also reread my post and I want to emphasize that getting calories in, by any means necessary (PEG, liquids, etc.) is what is important! 

I will say that, there were a few days there where I think my husband would have used a PEG if he had one in.  He was lucky he had a few spare pounds to start with, so he did okay with the weight loss and switched to liquids only during that time.  It was during Thanksgiving week too. Poor guy...we all ate turkey while he had an Ensure drink.  It was rough.  But, we sort of looked at it all with a good attitude and a bit of a sense of humor and he got through it.

My husband was T2N2M0.