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.

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 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

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