I think they test so that patients can be told that prognosis can be more positive if HPV positive... Chance of survival goes up quite a bit... That's what my Drs say and the little research I have  done supports  that...

But as you say things change so rapidly! 

I'm doing ok just want to get started... How long from diagnosis to treatment commenced for you? 

They are telling me at least another two weeks which feels like too long! 

Paula

Hi paula

i was diagnosed on April 28th at 12:35 .... yes that day and time sticks in my mind

at this point though it was defined as a secondary so then when on a raft of exporitories and a pet ct scan ... I eventually started my first Tomotherapy treatment on 7th July. 

my advice to you pre treatment .... IS EAT

i lost just over 3 stone towards the end of my treatment and managed to put a stone on before treatment and thank god I did

are you having feeding tube?

vatch

Hi Vatch

I will elect to have a feeding tube if they offer me a choice. I have no qualms about it... The pain already convinces me it may' be required. I wonder can you put alcohol down it? Joking xxx.... Only joking... Lol

Jesus I can't wait two months this thing is taking nerves and structures in my mouth all the time... Something changes every day.. It's in steroids! You must  have been frantic! 

I intend to call or text every day and update then of changes! And ask when?! 

I'm a big girl.. Lol.. And never thought it could be a bonus in a million years! But now I think I will treasure  my extra resources as we are politely calling then..

I am however eating... But the pain has become a serious issue and haven't even started yet! But I am maintaining my swallow and doing jaw and apeture exercises as you advised in your blog! 

Also walking my dogs! A lot! 

Where was your primary? I may have read it but I've read so much I can't remember... sorry

have a great day... Hope the sun is shining..x

Vatch,

Not a betting aficionado, but six hours on a drip brings out the worst in me. 

Have had to give up on calcium tablets - they are about an inch in diameter and just thinking about them makes me gag. Seeing consultant on Monday and hoping there is a liquid or dissolvable alternative. 

John

There is... But it's not nice either.... Sorry

I seen specialist today and he confirmed my cancer stemmed from virus , he said it usually responds to treatment but will have to see how I get on. He warned me the treatment is gruelling and I’ll lose weight and probably need a feeding tube for a while. He’s meeting with other specialist a week on Monday to discuss treatment and make a plan. I understand they can’t confirm it’ll definitely work but I’m hoping if they thought it wouldn’t they would tell me? I’m very very scared. How are you getting on? Have you had any treatment yet? Xx

Hi Lynne,

I am glad that your little monster has a virus! the treatment is the same but my consulatant was very pleased when she saw i was HPV positive she said that HPV positive tumours generally respond well to treatment. she said it increased the recovery chances significantly ..but then did go on to remind me that I do have cancer and should remain cautious with my optimism which is I think bizzarre! but I have decided that the virus is my friend after reading a little of the research avaialble.

They have said I may need a feeding tube and I will definitely get one if they offer me one. they are relatively easy to manage and just give you the chance to keep hydrated and nourished on the days when treatment and the THING in your mouth may be detremined to starve you!

I dont know if you saw my earlier post, I am over weight and am treating my treatment as an oppurtunity to let the thin person within come out, I am looking forward to loosing a little of my fat stores...lol...but hydration is vital!!! yesterday I found I could barely get water down my throat hurt so much with the biopsy and cancer lesions in the soft pallet at the back of my throat...warm water is easier to swallow, but then i ate crisps and it felt good which is F'ing crazy!!!!

you must stay hydrated and take at least 1600 calories a day , maybe more they will advise you sooner or later, dont you find they seem to keep each little nuget like your next little prize for winning the cancer game!    you need the energy to fight this thing..did you read Vatch's blog? talk to Vatch on here

i have just found out that a girl at work's husband is two years post treatment and he is coming to see me monday so I will share...lol

I am feeling much more positive that I will get a cure or at least time ..... this thing makes you feel cheated...im trying not to let it....we can do this ..try and enjoy the rest of your weekend..

can you still eat? if so have all the things you like ...I am ...for once I dont need to worry about being on a diet!

take care , be positive, 

love paula...x

Hi Lynne and Paula,

I was told that having the HPV virus would help the treatment. I did not have it. Re food tube, the stance would seem to vary from consultant to consultant. Mine effectively said he did not go the tube route. Rather than continue to  swallow fortijuice, at the moment I would settle for sustenance to be provided via any vein or orifice that they cared to pick.

Re weight, having been pretty much bedbound for seven months before cancer was even on the horizon, I was about 17 stone. I am now down to 15 and am quite happy that, at 6' 2", I am now comfortably overweight, rather than clinically obese. Clothes are a bit of an issue - what I've got are too big and cannot go shopping as I dont know where I'm going to end up. Guess it's elasticated for a while.

Good luck

John

HI John,

cant you ask for a feeding tube now? I am not sure if you have finished treatment or still ogoing? I guess that would make the choice harder. How much longer do you expect to feel like crap and how much longer until they scan you again or whatever the procedure is to be sure you are clear? If you really feel you need a tube you should push for one....

I am going to ask for one! 

I am considered morbidly obese, so am hoping I have good fat resources to call on, but walk 12-15000 steps a day and work full time as a nurse and also run a little lifestyle block with cows etc so dont consider myself MORBID just like the finer things in life like pork belly and wine!

I wont tell you my start weight but will keep you up to date with the freeing of the thin lady within ...there have to be some perks to this! I am going elastic for a while to...

I am sorry you are having a tough time John...I hope they fix you up quick smart...I can feel your frustration...

if its not rude to ask why were you laid up for 7 months before all this started?

thinking of you 

Paula down under

I had my biopsy taken just over two weeks ago so my mouth is healing well and I’m back to being able to eat properly again , only thing that seems to hurt is chocolate unfortunately! The specialist said it’s a good thing I’m still able to eat and drink normally and open my mouth wide. I have had an insatiable hunger the last two days , no matter what I eat I’m still starving. But I’m just going to stuff my face while im able to! . You sound so upbeat and positive about everything , must admit it does help me reading your comments . I just want to be told I’ll be okay but obviously they can’t promise that. Xx