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.

Im good thanks Hazel, still dry mouth problems especially when excercising playing football etc, I get bouts of fatigue too but overall good thanks, I have a check up mid June then every 2 months (I think) we are off to Gran Canaria at the weekend first holiday since last September when all this started, really ready for it :)

Dave

Hi Dave enjoy the holiday Julie amd yiu will be ready for it , justbremember factor 50 for the neck and mix a bit of fake tan in with it yiu will be fine. Plenty if water for flight unfortunately yiu will have to pay WH Smith a arm and a leg airside for it but I found flying dries me uo before and does more now .enjoy have a brill time

h x ps go into mercadona supermarket whilst away get Trident dental chewing gum with xylitol in it ut really helps I’ve brought loads back 

h x

Thanks Hazel good points I expect aircraft cabins can cause us to feel dehydrated, noted thanks.

Dave

Hi Dave i flew from Tenerife to Edinburgh and back last week, took 1.5 litres with me each way, with that and gum i was fine,no other issues, but booked aisle seat both ways for loo and to stand plenty. All worked great, bit dry nose. Glad you are doing well.

Thanks TFS all tips appreciated

Is there some kind of epidemic going on with HPV related throat cancer? 

Iv just found out about someone else who has got it and his mate has it too.

Dave

Dave

Few of us in private messaging have been commenting and noticing the increase of cases on here as well.

Shame and not great to hear or see. All we can do is try our very  best to help all on here.

ian

Its worrying Ian, have you noticed that its mostly white people getting treated too? its something that I noticed at the hospital.

Dave  

Yes Dave the USA indeed call it an "epidemic" this HPV related cancer.

There is no vaccine to clear HPV from our systems as far as I know but certain vitamins can help clear it, is anyone trying anything or have any more info?

Dave

There is no vaccine to clear HPV from our systems as far as I know but certain vitamins can help clear it, is anyone trying anything or have any more info?

Dave

Another young lad has just posted with Hpv . I have directed him here for advice . X 

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

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

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

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