Hi

I just wanted to thank everyone involved in this thread, as reading it has been incredibly helpful over the last few weeks.

My husband had a swelling on his neck diagnosed as cancerous at the start of this month (April 2019).  It was a shock: he's never smoked, rarely drinks, cycles regularly, eats sensibly and is in good health - or so we believed.  Since then he's undergone a CT scan and biopsy which have confirmed the tumour as being at the base of his tongue and HPV16+.  He hasn't had his tonsils removed, as the sugeon doing the biopsy/panendoscopy thought they looked OK, but going by the scan the consultant thinks one has been affected, as well as some lymph nodes.  He gets assessed by the dental team tomorrow and has an MRI booked for the end of this month, plus whatever other appointments are yet to be arranged, with chemoradiotherapy due to start in about 4 weeks.

The last couple of weeks have been stressful (to say the least!), but this - and a couple of other similar threads - have been incredibly useful, as have the wonderful blogs by Ian and Hazel.  Having an insight into the treatments and their side effects meant that we felt quite well informed about what lies ahead even before speaking to the hospital consultants, and instead of everything being a blur, we were able to take in what was said and manage to ask some sensible questions.  Without all of you generously sharing your experiences it would have been a very different story.

Because of that, I wanted to let people know how important this thread has been for us - and that all your tips for coping with the treatment etc have been gratefully noted!  It's not a good situation to find ourselves in, but we feel pretty positive that we'll come out the other side in one piece.

I hope everyone who has posted, or who might be reading this, is doing well and continues to do so. 

Thanks again, and best wishes to you all

Have to echo this, prepared me so well, a Godsend.

Hi! I work in a research lab and I have been reading about HPV in the last years. As you may already know, it is a really common infection that 80% of people will have sooner or later in life and usually our inmune system can get rid of it. That's why you must have heard some vitamins help, but it is not directly true. As it has been mentioned before, it seems that there is a new "epidemic" of HPV related cancers, specially tonsil/base of the tongue, caused mainly by strains 16/18/58... Researchers thinks this is probably because there is an increase of oral sex and people tend to think that unprotected oral sex doesn't carry major risks, but also because doctors started to investigate this after finding this type of cancer in non smokers. In the past the smoking/drinking rates were way higher and we thought it was simply the cause for this cancer. But when younger people started to develope this, they focused on finding other risk factors and the HPV appeared. Since then almost every case is investigated to see if it is caused by HPV or not since it is a signal of good prognosis. Also, a "fun fact" is that HPV tonsil cancer was also thought to be less common in the past because people used to get rid of their tonsils when they were born. That doesn't mean that removing your tonsils when you are a kid will protect you from getting tonsil cancer, since small parts of tonsillar tissue can be left during the op and also it can cause your base of the tongue tissue to grow, but it seems to decrease the chances of getting it. 

You are correct, right now there is no vaccine to clear HPV from our system. At least, not yet. There is an investigation about a therapeutic vaccine (one that can clear HPV once infected) called VGX-3100, and the same company is developing a new inmunotherapy to treat HPV related head and neck cancers to avoid the actual treatment. 

What's the problem with HPV? Well, there are ways to keep track of HPV infections in the cervix and also in anal parts through smears... but that's not the case for the mouth. That's why VGX-3100 is focused on cervical and anal lesions. There is no way of keep track of an infection in the throat so most conclusions are empirical.

The scientific community is focused on vaccinating the entire population, not just girls as happens in most of modern countries right now. Gardasil 9 is supossed to give protection against strains 16/18/58 among others, who are the ones that cause most of cancers. We still don't know for sure if it also provides protection to the mouth/base of the tongue but it is reasonable to think so and thats why some countries are starting to vaccinate boys too. 

There are studies trying to understand how HPV infection of the tonsils work. It seems that the tissue of the tonsils "hides" the virus to our inmune system, making it harder to clear than in the cervix. But, until we find more ways of keeping track of infections and not wait until the cancer develops vaccinating the entire population and trying to find new ways of treatment to those who lose protection/are not vaccinating is the way to go.

Thanks Lemonice I had my tonsils out aged 4 so Iv been especially unlucky, keep the info coming.

Dave

I've been looking into getting the HPV vaccine for our son, so can say a little more about the cost etc.  We're on the south coast, and things might be different in other parts of the country, but both Boots and Superdrug do it for around £450-£475.  For over 15 year olds it involves having 3 shots, with a month between the first and second, and the third being given 6 months after the first.  They think it should give 10 years protection - by which time a generation of schoolchildren (hopefully both male and female) will have been vaccinated and the overall risk of coming into contact with a 'dangerous' strain of HPV should be lower.

The cheapest place for us is Lloyds Pharmacy chain who do all three shots for £429, but I don't know how much of the country they cover.

 

Really interesting and very helpful Lemoice.

Like Dave I had my tonsils removed when I was 4 and was told procedure back then did not remove them completely so hence ability to grow back in again. 

Same Jaxter

Helpful iinformation around yet another aspect around this type of cancer

Found both posts to be really helpful and informative insight.

Onwards & Upwards
Ian

Hi jaxter thanks for tha I know the couple who paid £700 couldn’t get an appointment at Lloyd’s Superdrug or boots for months hence they ended up paying privately as his dad was being treated they just wanted their son covering. It’s great what information we can pull together 

thank you lemon ice very informative keep it coming

h x 

Hi Dave-interesting you asked is there a HPV epidemic- my husband knows of 2 other work mates who havre it too at the moment- 1 few weeks ahead of him, 1 few weeks behind- strange especially when most of us hadn't even heard of tonsil cancer!

Thank you Lemonice

i have enquired into getting my son vaccinated privately as he will turn 18 before the National roll out to boys this autumn and it will not be covering those over 12/13 at least to begin with unless he is having sex with men (as yet I don’t know!)

just think of HPV is so common I may have a familial predisposition.... 

x

Hello all-hope youre having a better day than us- Joe has to have a NG tube tomorrow :-(  I'm kind of glad in a way as can see he needs it & think the thought of next weeks chemo would destroy him-so eases that pressure I guess. But he is so low at the moment & it's so hard trying to remain positive, I suppose it's to be expected? He's dissappointed in himself for having to have a tube-which I told him he shouldn't be- :-(

IHi 

please please tell him it’s nothing to be  disappointed about it’s just anither  way getting vital nutrients into his body. 

Plus extra fluids which in the next few weeks are vital m yiu willmdind that you will find that you  becomes the Lynch  pin of the entire proceeding John my hubby used to hook mine up every time plus put the vital meds in via a syringe which left me free to concentrate on getting through the last few weeks he can still try and maintain swallow which I assure you is easier when you aren’t trying to shovel food down you. Take the positive s. 

Make a chart it’s what I did don’t worry if he can onky take  small amounts some  days I could could  do 90 mins or 300 calories but in the words of Tesco every little helps.  I tried to get 1900 calories and at least 2 or 3 litres of liquid in the chart really helps as you can see why yiu are doing plus when you meet with dietician they can see as well.

Our  stomachs shrink as he like me will have been struggling to eat for a whike so you can’t all of a sudden introduce huge amounts if liquid. 

A tip for him when tube being inserted  drink water through a straw itvreally does help. Don’t worry if first time he struggles with it I did then took my self out of room said tommy self grow up Hazel positive mental attitude went back in and in it went. From then on itbwas one less thing to worry about. Tell him when having treatment radiotherapy before he goes into room take the tape off that fasten sure to his cheek makes it easier to push tube through nose hole in mask but the Radiotherapy teams are very good.

any questions just ask 

hazel x or re read my blog for tios 

My husband's RT starts the week after next, Other Half, so I can only imagine how things are for you at the moment.  I thought it might be helpful for you to know though, that he's already been given a date for an NG tube to be fitted.  He was given the choice of a RIG or NG - he couldn't have a PEG because of the tumour's location - but effectively told he had to have one or the other.  The NG's scheduled to go in about 4 weeks into the treatment (the day after my 50th birthday, in fact!) and will stay for as long as he needs it post-RT.  As with losing 6 healthy teeth, he's not thrilled at the prospect, but is looking at it as just another part of the treatment.

So, if it's any comfort, the policy with feeding tubes really does seem to be down to individual hospitals, and perhaps even the teams within them.  If you were in the same area as us, your husband would feel no sense of disappointment in himself at all, because it would have been planned right from the start. 

I hope you both have reason to feel more positive as the week goes on, and that the benefits of having the tube soon outweigh the emotional blow of needing it.

My husband's RT starts the week after next, Other Half, so I can only imagine how things are for you at the moment.  I thought it might be helpful for you to know though, that he's already been given a date for an NG tube to be fitted.  He was given the choice of a RIG or NG - he couldn't have a PEG because of the tumour's location - but effectively told he had to have one or the other.  The NG's scheduled to go in about 4 weeks into the treatment (the day after my 50th birthday, in fact!) and will stay for as long as he needs it post-RT.  As with losing 6 healthy teeth, he's not thrilled at the prospect, but is looking at it as just another part of the treatment.

So, if it's any comfort, the policy with feeding tubes really does seem to be down to individual hospitals, and perhaps even the teams within them.  If you were in the same area as us, your husband would feel no sense of disappointment in himself at all, because it would have been planned right from the start. 

I hope you both have reason to feel more positive as the week goes on, and that the benefits of having the tube soon outweigh the emotional blow of needing it.

Thanks so much-Hazel & Jaxter- what you both said really helped us today-I told my husband & it makes sense. That's so true too about him not being dissappointed if the NGtube was 'planned' to be put in rather than him feeling he's failed-bless him he has tried so hard. Yes different teams have different ways-i might mention that to ours as that seems better to me-when I can see the impact it can have. Just to mention too he's just been started on Fentanyl patches too (long acting analgesia)-to help with the pain-as well as the Oromorph-will let you know how that goes-should help  a bit as he's been struggling. 

Can I ask Jaxter how old is your husband? Sorry to hear your 50th is at this time-you'll just have to celebrate it on your 51st! I'm 52 -just! spent my birthday having the 2 sessions of radiotherapy that day :-/  Hope he's doing ok at the moment.

Take care all Joy x

Hi Joy

He turned 57 at the end of March, and was diagnosed 4 days later.  We're really nailing those anniversaries this year!  We were given the list of his RT appointments yesterday and on my birthday itself he's got RT and a review - woo!  I have friends with the same 'big' birthday coming up who've organised parties or booked exotic holidays.  Given what's going on I'm glad we'd planned nothing more than a take-away curry.  Although, even that's going to have to be postponed.  ;)

I'm really glad you're both feeling a bit better about the NG tube and hope the patches alleviate the pain he's feeling.  It's such a roller-coaster ride - emotionally and physically.  I think anything that makes it easier to cope with has got to be a plus.

Hi don’t worry there will be other birthdays ,as for curry’s lol they are overrated. Lol. Poached eggs are the way to go. Sorry but found s sense of humour some days was the only thing that kept me going. Just keep positive and strong remember if u can do it anyone can .

kerp in touch as and when ask any questions you may have 

off for e n t check up now , proof that the us light at the end if the tunnel.

h x

Hello all- So I spent all yesterday convincing my husband how the NG tube will be so much better & better post next chemo etc-thougfht I'd convinced him-he was really down & against it at 1st-so go in today for treat ment, saw the nurse specialist who tols us he's not having it now! AARRGGHH! As he's not ill enough! Yes you can imagine how I felt-yes Jaxter it really is an emotional roller coaster enough as it is without the team not communicating properly (the dieticain told us we'd have it today-yesterday). Anyway there you go-not very impressed.

On the plus side the Fentanyl patch is working well-think it's more psychological to be honest as it takes a few days to work fully-but if it works it works! He's just having the ensures at the moment as it's easier & he gained about a pound from just yesterday (another reason they said no to the NG).

Will see how we go- one thing is how things seem to change so quickly-it's not even daily-it's hourly. 

Well on the countdowm-6 more rads to go (yayy) I'm going to be son emotional on the lastday when he rings the bell-I well up everyday people ring it as it is & I don't even know them. A guys daughter was looking at me the other day-I'm crying about her dad who I don't know from Adam-like a crazy woman & she's not!

That was so lovely what you wrote Jane- that you will recover but the cancer won't- that made me cry too-but then I do that a lot at the moment-I used to be quite a normal person...

Anyway thanks again all-so good to read all your threads.Take care Joy x

Hi Joy oh well fingers x but if things change they will do it . 6 days and now then radiotherapy over just keep it in your mind that hubby may want to get back to normal quickly but it still takes time for all the radiation to leave our bodies ,some drs say 10/14days ! So far I haven’t been in touch with anyone who has been that lucky .i use this phrase a lot your body is like a radiator and the radiation has to leak out slowly .Drinks lots if water and a gentle walk  maybe rounds the garden to start without baby steps, we are all with you through this challenging time.

On a positive note just back from ENT consultant camera up the nose and all looking as it should plus no signs of any reoccurrence down there. Plus he commented in Hiw fit and healthy I was looking. So onward and uowards

keep I touch 

hazel x 

Wonderful new Hazel . X x 

Great Hazel and another good report card

Onwards & Upwards
Ian

Hi Ian thank yiu onky 2 nd time camera up nose last time was 29 May last year when it was first diagnosed,so quite reassuring in a silly way. Luckily I have perfect nostrils apparantlybso up and down it goes with ease !! Lol

h x

Hi Hazel

perfect nostrils huh....perhaps you are a fire breathing tough yorkshire lass.
Maybe John might have a view lol 

Actually agree with you you re scope. had mine done a well this week as you know and I like scope going down just to have a good check over so makes sense to me.
At least you have not had the agnst like us Liverpool followers or Tottenham fans have had this week.
Ouch lol !

Fab week tho of footie and should be great final.

ian x

Hi Ian you know me too well ! Yep perfect fire breathing dragon sums me up well John would agree well her dare do nothing else. Although likecwe say John and Fiona are immune to the cancer card now it just doesn’t work like it used too. I cooked tea washed up and put shopping away today it’s just not on ! Lol

ps thought I were my mate cutting remarks re football. Lol no am  pleased  for U.K.  as s whole onwards n upwards 

h x from a soggy grey Yorkshire