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.

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.

The vaccine calendar is different in each country (it even changes depending on parts of each country) and usually is based con cost/effectiveness which to me doesn't make sense at all. HPV is really easy to catch, even using protection you can still get it. Also new generations have usally sex with more people, which is not something to be ashamed. Due to this, vaccinating only half of the population is just discriminating the other half. First of all, because men can have sex with men, and I think its 2019, there is no need to ask our kids who are they going to have sex with, it's better for them to be already protected as muchs as we can when the time comes. Second of all, we still think in our society as a closed environment when it's not true at all. Imagine a straight kid finish school that decides to go on a trip with his friends to Spain. A 20 years old Spanish lady may not have been vaccinated against HPV because 10 years ago it wasn't mandatory in Spain, so there you have a possible infection. HPV vaccine should be free and mandatory in every single european citizen, no matter sex/orientation... But that is my opinion.

Is it expensive? Yeah, Gardasil and Gardasil9 are pretty expensive. But treating a head & neck cancer is worse.

Any idea when VGX-3100 will become available Lemonice?

Dave

That's hard to tell. Actually VGX3100 is in a promising Phase 3 program for the cervix and Phase 2 for anal and vulva. If everything goes as planned, in some years (that is pretty soon for a vaccine) it must be available. The problem comes with head and neck patients. Would they benefit from it? Maybe, but we don't know. This vaccine is used in people who show precancerous lessions. The vaccine is administrated and then the medical team check if the inmune system is able to regenerate those lessions and fight the infection. But, as I said, they are being monitored to see the progress of it so in case the vaccine doesn't work, they can do a more invasive procedure to remove the cells and avoid the cancer. In head and neck we simply can't do that at the moment because there is not known way to fully track hpv infection there. Will they administrate VGX3100 to people as prevention for head and neck? I don't think so to be honest. First we need some strategy to test and follow hpv infections in that part of the body. But of course every improvement in HPV, no matter what region, is really important so in the future it could be applied to head/neck...

BUT, the same company is developing MEDI0457, an investigational immunotherapy for head and neck cancers in combination with durvalumab. It's for people who already have cancer. It uses the VGX3100 vaccine but in a different way, so it triggers the inmune system to kill infected tumor cells. This trial is in Phase 2 and we still have a lot to learn about it before jumping to conclusions. 

In the same way there are numerous trials to see if patients with HPV head and neck cancers can benefit from less agressive treatments or different ones as proton therapy, reaching less side effects from chemo/radiation.

I am sorry for posting sooo long posts but I am really interested in this subject.

Make your posts as long as you like I find them informative and interesting.

Dave

Hi please jeep on posting the more  info the better 

like dave says fascinating and informative.

best wishes

Hazel x

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

Dear lemonice 

really engaging to get the scientific progress updates. Thank you. I think the more we can all understand what is being done to safely give us the most effective, least disruptive treatment the better. Don’t disappear from this forum please!

jane x

Hello Other Half

i only briefly had my ng tube and no one likes it but weighed up against taking the worry out of hydration, getting medicines down and nutrition it will be a big allievistor of stress too. I had a few days of desperation and tears after it came out as I hit a glitch and was starting to dehydrate. Because I’d had throat / tongue / soft pallet surgery the action of swallowing and the movement of liquids and mush past my raw gullet were painful and astringent. I couldn’t injest the pain relief to alleviate this in order to then make it easier. 

Your husband can still eat and drink if able to on occasion so it doesn’t take that away but once the tube is in not being able to easily won’t be as anxiety inducing as you have a fall back position. 

Wishing both of you that the days pass quickly. Think what all that nasty radiotherapy is doing to the cancer. You will recover but it won’t.....

jane 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 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 

hazel

As an aside re footie

jest re footie lol..am not an avid follower but like Liverpool. Im sure Man Utd will be back next season although big job.I wonder if Ole would have got the job if they had waited until end season.
Its a great league and the more that challenge the better the entertaintment

Sorry all for the digress to footie.

Hazel
meant to ask - how is your saliva issues. Are they pretty normal now or still no settled pattern? and can I ask where you are with sleep pattern at your stage.I'm still a bit random with thi fatigue thing. I know might have been different pattern while you were  abroad but would be interested to hear if you have just slipped back into awake all day and a normal nights sleep since back home?
Do you have any days that differ or is your sleep/fatigue perfectly normal.

Oh and yes, lol, I had to make my own tea. It's just awful now.

Ian x

Great news Hazel and to everyone else there’s a lot of positivity on here at the moment, if you look on some of the other chats which I don’t like to really you will see that we although unlucky we were also to an extent lucky to get this type of cancer as it’s so treatable.

Small mercies and all that, 

Dave