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.

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

Hello all-hope youre having a better day than us- Joe has to have a NG tube tomorrow :-(  I'm kind of glad in a way as can see he needs it & think the thought of next weeks chemo would destroy him-so eases that pressure I guess. But he is so low at the moment & it's so hard trying to remain positive, I suppose it's to be expected? He's dissappointed in himself for having to have a tube-which I told him he shouldn't be- :-(

IHi 

please please tell him it’s nothing to be  disappointed about it’s just anither  way getting vital nutrients into his body. 

Plus extra fluids which in the next few weeks are vital m yiu willmdind that you will find that you  becomes the Lynch  pin of the entire proceeding John my hubby used to hook mine up every time plus put the vital meds in via a syringe which left me free to concentrate on getting through the last few weeks he can still try and maintain swallow which I assure you is easier when you aren’t trying to shovel food down you. Take the positive s. 

Make a chart it’s what I did don’t worry if he can onky take  small amounts some  days I could could  do 90 mins or 300 calories but in the words of Tesco every little helps.  I tried to get 1900 calories and at least 2 or 3 litres of liquid in the chart really helps as you can see why yiu are doing plus when you meet with dietician they can see as well.

Our  stomachs shrink as he like me will have been struggling to eat for a whike so you can’t all of a sudden introduce huge amounts if liquid. 

A tip for him when tube being inserted  drink water through a straw itvreally does help. Don’t worry if first time he struggles with it I did then took my self out of room said tommy self grow up Hazel positive mental attitude went back in and in it went. From then on itbwas one less thing to worry about. Tell him when having treatment radiotherapy before he goes into room take the tape off that fasten sure to his cheek makes it easier to push tube through nose hole in mask but the Radiotherapy teams are very good.

any questions just ask 

hazel x or re read my blog for tios 

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.

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

Hi Lemonice,

All of us have an interest in this subject for obvious reasons and I have found your posts fascinating and most welcome. 
I personally think its great to learn more about this as I have been personally effected and its refreshing to hear some scientific aspcect of the disease. I was interested in some of the advice and more techincal aspects and scientific advice from my medical support team but you have added quite another dimension. One of the postive aspects from your posts is the advancing in knowldege around this and this gives me hope for the future and that one day there will be more pre ventative solutions.

Many thanks for sharing a wonderful insight

regards

Ian