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 Dave .yes unfortunately h p v 16+ or 18+  head and neck cancer in males is the fastest growing cancer in the western world 97% male and I am in the minority of 3% female which are the figures my oncologist gave me last year. 

He is hoping that by 2050 it’s is almost eradicated as young girls  age 13 providing parents allow it are vaccinated against h p v before they are sexually active likewise fingers x young males in the U.K. will be vaccinated next year around the age of 13 again parents allowing it. It’s up to us as cancer survivors of it to push the message across. You can pay for boys to be vaccinated before they become sexually active think is approximately £700 ,a couple who we met whilst having treatment (dad) had it paid for their 15 year old as they didn’t want him to get it later in life. 

Hope this helps explain. Little apparently 84% of the worlds population at any one time have the virus normally our bodies get rid of it within 2 years .

thus may be me but ut seem s that some of us are at a time of life where we are relatively fit before we get diagnosed and is this making  immune systems weaker ? And therefore easier for the virus to attack ?

rant over 

h xx 

Thanks Hazel, my consultant said as we get older things dont work as well as they used to..

we are renewing cells by the billions all the time and the HPV virus attacks our DNA and causes a cell to divide, that becomes cancerous and the process begins. 

As a woman you are even more unlucky than all the men  getting this, a rare case.

Dave

HibDave thank you was always special. Lol. Xx

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

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

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

Hi! Thanks so much, I find this information really helpful because the more we now, a better treatment will come. And also because it's increasing in incidence and could turn into a huge problem in the future, I think as a society we don't give as much atention as we should to this. I wanted to update a little bit more with some information I found recently and I think could be interesting. 

As I said before and probably you all know, since being HPV+ has a more possitive prognosis, a deintensification of treatment is being tested. This could likely lead to less side effects and associated risks of radiotherapy. There is people trying to *** who could benefit from this and a test is being evaluated to find what people tend to have a worse prognosis by finding Circulating Tumor Cells. This CTCs are like seeds, they are in the blood and are the ones that could lead to additional tumors. It seems that maybe, evaluating the existence of CTCs prior to treatment could help planning the treatment ahead and deintensificate it in case it's negative.

Also, most people after treatment are followed up to see what's going on, having the camera down the nose and some scans. This could change in the future since we (by 'we' I mean the scientific community) are investigating how circulating HPV DNA could be used as a surveillance tool. It seems that people who don't have circulating HPV DNA after treatment are way less likely to suffer a recurrence. I think that, if this turns true, it would be amazing. Not only to calm the patient after treatment in case the test comes back negative and maybe not exposing them to more radiation at so many scans, but also to follow more closely those ones who are possitive. 

Also I wanna say that I constantly use "maybe", "likely"... Because articles are based on limited data that at the end may not lead to something that will be used, but are investigated since even fails are useful. 

Here's the link to an article that talks a little bit more about this: www.ncbi.nlm.nih.gov/.../31071126

Have a great weekend :love:

Hi lemon I’ve brill thank you if I can help in any way on your research just ask . Are you still in Spain we returned last weekend ? 

Will read the article avidly 

Hazel x

Wow have just read the article very interesting facts , will be interested to know more when eventually done. Is this a Greek study looking at the drs names ? 

Hazel 

Hi Lemon - some excellent information here and also some other Informative abstracts to read. Ut will be interesting to see how treatment regimes change for OPSCC’s that are HPV+ and non smoking -as opposed to OSCC’s and OPSCC’s that are HPV- or smoking related in the future along with the interesting research into the biochemical markers to predict reoccurrence. Im sure my husband - although has the nasopharyngeal camera with no complaints would be interested in an alternative.

Keep on with the info its really useful

Emma