HPV vaccine...

I think there are 2 aspects to this.  Firstly, there is an established vaccine that they now give to both sexes as teenagers.  That hits a fair few of the HPV strains and may in time help reduce the prevalence of or HPV H&N cancers.  Secondly, there are some trials regarding a vaccine given post cancer treatment which I believe a couple of people are on.  Like so many trials it is early days and it will be a long time before the outcomes are known as to its effectiveness.  In the meantime, hats off to those that are on the trials for standing up and trying these new options for us all.

The two are quite different. Preventive vaccines target the HPV virus while  therapeutic vaccines enable the body to recognise and fight  HPV transformed cells, ie cancer. There’s a good article here 

www.dovepress.com/getfile.php

The advice for women with HPV discovered on PAP tests is this 

people who have an HPV infection and/or an abnormal PAP that may indicate an HPV infection should still receive the HPV vaccine if they are in the appropriate age group (9 through 26 years) because the vaccine may protect them against high risk types that they have not yet acquired. However, these people should be told that the vaccination will not cure them of current HPV infection 

So you could extrapolate that to HNC

What does your oncologist suggest? 

Hi Shab. I had HPV+ tonsillar SCC two years ago and I’m currently helping trial a BioNTech therapeutic vaccine at Southampton hospital. It’s a RNA vaccine designed to boost the immune system should the cancer recur. Theoretically the body should then deal with it as it should’ve done in the first place. Basically they’ve been giving me bigger and bigger doses intravenously until I react. Last time (dose #4) I did react.  I’m in again this week and they say they will probably lower the doses now until I stay stable. 4 more doses to go then I’m done. 

I was wondering how you were getting on So the vaccine is not to prevent re infection but to treat existing cancer? 
Is your trial a phase 1 ? To test out safe doses? 

It’s both really Dani. There’s an arm of the trial to see how it deals with actual recurrence and another arm to hopefully prevent recurrence by nipping it in the bud should it try to kick off again. Does that make sense? I’m in the latter group. However I’m not trialling its efficacy. Just how much of the vaccine can be tolerated.

The Americans have a test for saliva HPV. I guess that way you could see if you were still infected. It would be wonderful to think you could get rid of persistent infection. Keep up the good work. Xx

Thanks Dani, there hasn't been much discussion around it. I do feel it's a little like if you know which questions to ask you'll get the info then but otherwise its very much about giving you info you need to know now... the strain of the NHS!  It's only really crept into my mind (6mths after treatment) that I could potentially be reinfected and given our reactions of not clearing the virus and the implications that unfold. 

I do have a pap test I need to arrange and I'll be asking questions then too.

I just feel there shouldn't be an age limit if you've suffered the consequences and if we're paying privately we should be on the list accepted for the vaccine, even if the cover is low.

Thanks MarkEl, 

Well done for doing this! I hope you're not suffering too much and the rest of the trial goes well. Fingers crossed the outcomes are good and it's out there soon! I'm in Leeds and as we have one of the biggest cancer units I'll be asking if there are any trials I can be included in later... at 6mths post treatment I doubt I'd be able to muster up enough saliva if it was needed and sure they'll want to leave me alone for a while too!

Thanks Shab. No saliva needed - just buckets of blood!

I think originally it was only being done in Southampton (in the UK) but one of the research nurses said this week that it’s beginning to be trialled in other centres now. It’s always worth asking. It’s called the HARE 40 project. I’ve a feeling you have to be at least a year post-treatment to take part in the trial though.

She also said they’ve been finding it quite difficult to recruit and retain volunteers as it’s quite a time commitment and the reaction, when and if it happens, can be scary. I’m lucky I’m retired so am able to spare the time - 2 visits to hospital each week with the possibility of being kept in overnight. As I said above,  I did react at Week 4’s dose and they kept me in overnight but this week (5) they lowered it again and it was quite mild so I went home in the evening. 3 more doses to go. 

Shab71 said:

here hasn't been much discussion around it. I do feel it's a little like if you know which questions to ask you'll get the info then but otherwise its very much about giving you info you need to know now... the strain of the NHS!  It's only really crept into my mind (6mths after treatment) that I could potentially be reinfected and given our reactions of not clearing the virus and the implications that unfold. 

Hi. Anybody who has recovered from HPV oral cancer is indeed at a higher risk of getting another. Whether this is new infection or infection that remains I don’t know. I have read a figure of 20% of us with a new primary cancer ( that’s not a recurrence which is totally different)  
I totally agree that it’s the questions we ask that give us the answers but we have to know the questions. 
There is a liquid biopsy that can be done to predict such chances but not in the U.K.  

Its a minefield