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- :-(

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.

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.

Hi Jane

We didn’t really get a definitive answer on the dissection, just they won’t consider it until after chemo/radio in the hope he won’t need it.

I was made to feel like a pain in the *** for asking too many questions, ie which lymph nodes were affected, what size was the mass, when was it actually sized, would it have grown since then, how early would an abnormality show up on a pet scan. TBH I considered them all valid questions but I just got the “i’m The Dr and you e been on Google” look.

We have a date to start treatment, 27th May, right at the start of half term week so not sure how we’re going to juggle th apt’s, journey and kids. I don’t want him to go alone but equally I don’t want to take the kids along so will be relying on friends and family right from the start.

we still haven’t told them so that is a discussion neither of us are looking forward to but has to come soon. Our youngest is too young to really understand, it’s the eldest I worry about.

Mark is adament he is not having a RIG despite the overly persuasive advice, I think for him that equals really ill and he’s not ready to accept he is. It also gives him that bit of control. If needs be he will accept an NG part way through treatment but wants to see how he goes.

We are planning of a last minute escape the week prior to treatment, any advice on insurance??

Hazel?

We were told he needs a high fluoride toothpaste but not if it was prescribed, or we need to source it?

Also I keep reading about a specific chewing gum for dry mouth, what’s it called please anyone?

Jo. Xx

Make your posts as long as you like I find them informative and interesting.

Dave

Hi jo

toothpaste  is duraphat your dentist will prescribe it I get 4 tubes s time 

get a really soft toothbrush curaprox from amazon £9 for 3 invaluable.

chewing gum will be needed later if hubby has saliva problems you need one with xylitol in it the mouth ulcer company on line  u can also try Holland and Barrett  but don’t get any with  sorbitol as main ingredient as that’s too sugary for our delicate mouths  .

i also nowcat night use half a xyilmelt tablet that’s to increase saliva at night again online mouth ulcer company 

good luck for 27 th it’s is doable if I can do it anyone can  the N G tube isn’t that bad look at  it as a lifesaver 

travel  insurance you need to declare to any insurer. For 2/3 week trips people I know have used boots don’t do it online as you need to explain over phone. People I know got £58?for 2 weeks they had already finished treatment.