Hi Mel thank you for kind words 

I had 2 big doses of chemo different hospital s do different dosages I was down for 3 x 33% so I ended up with 66%  hour hubybuf having 6 will have 6  lower doses there’s no right or wrong way it’s diwn to individual oncologist s .

after my 2 doses it was decided I didn’t need the last one as my big lymph node had gone and I had hadn’t no side effects so we jointly decided to kickmthe 3 rd chemo into touch. As it’s  the belt and braces in conjunction with radiotherapy which is the main treatment.

dont worry as hubby will need you fit and we’ll remain positive and upbeat look at my blog for inspiration if me atb61 last year can do it anyone’s can. Ps I cry if I break a fingernail but cancer I took it on and kicked it’s butt.

am doing ok thank you dry mouth and lack of saliva is still around although last night I felt my saliva was deffo better. 

Hows your hubby doing with treatment I am in West Yorkshire where are you ?

keep in touch

Hazel

Hi Mel

I'm doing very well, thanks, almost exactly 3 years after my final treatment. As far as side effects are concerned, the loss of my sense of taste and lack of saliva were a real pain for quite a long time but are now almost back to normal. My appetite is still not what it was but that’s no bad thing as I was a bit overweight - I lost about 2.5kg and have kept most of it off. A quirky thing - there’s a small area of my neck where no stubble has grown for 3 years. If I wanted to grow a beard there would be a big hole in it (but I don’t). The only remaining side effect which does trouble me is some peripheral neuropathy which affects the sense of feeling in my fingers and, to a lesser extent, my feet. This was, I believe, a result of the Cisplatin and will probably improve eventually. A smallish price to pay I reckon.

Good luck to your husband - I really hope it all goes well for him.

Malcdp

Whoops, I meant 2.5 stones i.e. in old money! 

Malcdp

Hi babyjane

To be honest I actually don't know if they can diagnose tonsil cancer through a blood test. Mine was actually diagnosed through a biopsy into the lump itself. I didn't have any symptoms, and only noticed the lump, when I got a sore throat which  just lasted a couple of days. My local GP surgery didn't believe it was cancer and gave me two lots of antibiotics. 

For what it's worth in my opinion what you have doesn't sound like cancer. it sounds like you're getting reoccurring infections in your tonsils and/or throat. 

I'll keep my fingers crossed for you. 

Hi

All my blood tests were normal when I had them done after finding the lump in my neck so I don't think that they diagnose from blood tests. 

My diagnosis was from biopsies on my neck and the Consultant saw the tumour on my tonsil 

Hope that helps you xxx

Hi BJ

I am about 4 months out of treatment for HPV+ tonsil cancer/ lymph node and following this discussion amongst others.

I was curious to know if there was any 'markers' in blood or otherwise that would reveal the state of play with my cancer. The cons. oncologist told me that there are none for my condition.  I am led to believe that there are blood markers which are useful in tracking responses to treatment for certain cancers. However as a diagnostic tool the same markers can show 'false -positives' for cancer. That is they may be present for other reasons aside from cancer.

One thing that bugs me a little:
 My tonsil cancer is (or was) HPV+ driven. The HPV virus was responsible for my tonsil cancer. Since I may be a carrier of HPV (like so many people) then am I not susceptible to further throat cancers regardless of my success in eliminating my current one? Surely we need to eliminate the virus to prevent further cancer? Yet there is apparently no treatment available for HPV+ once contracted... only a vaccination against contracting it in the first place.  Sorry if this muddies the water.

I had hoped that once I had completed treatment for my tonsil cancer that there might be a blood test to reveal if I was clear of the disease. But apparently not. There are no  blood markers for squamous cell carcinoma ( my tonsil cancer) according to my oncologist. My post treatment check ups simply involve a 'look' and a 'feel by a consulting ENT doctor. I would feel more comfortable if there was a more definitive scientific test. But then maybe I worry too much. :)

Paul 

Hi Babyjane!

What your Consultant did say that your cancer is 'treatable and curable' is very encouraging. Because once my Consultant said the same & now my situation is very encouraging. So, let me share my experience with you openly.

I am a 58, non smoker & drinker. The last few years I had pain on the right side of my ear, the right side of my head & the right side of my lower jaw.

I visited different doctors but no one managed to know my problem. Finally, in November 2018 my wonderful GP noticed that the enlargement of my right side tonsil & immediately referred me to hospital.

In December 2018 removed my both tonsils by surgery & based on removed tonsils biopsy  I was diagnosed the right side of my throat with tonsil cancer or in medical terminology "Right low grade mucoepidermoid carcinoma of the tonsil"

Then my wonderful NHS Consultant suggested me for treatment to choose Robotic Surgery or Radiotherapy & Chemotherapy.
I choosed Robotic Surgery & had the Robotic Surgery in February 2019. After the surgery I had bad pain, bleeding & a dry mouth for about 8 weeks & then all the pain & dry mouth was gone.
The post surgery biopsy shows that I am cancer free now.

Thanks to God & my outstanding NHS doctors, at the moment I am absolutely fine & not taking any medicine, radio & chemotherapy. My doctors are reviewed my situation every 6 weeks & there has been no signs of disease reccurrence locally or regionally.
In August 2019 I will have my MRI scan & 6 month's review in September 2019.

Dear all, whatever happens will happen, be brave & don't give up, such is life & never lose hope!
All the best!

Hi everyone in the Club that we didn't want to join 

Tad - I'm so happy you're cured and cancer free 

I've finally got my diagnosis and they're 99% sure it's HPV in right tonsil spread to lymph nodes. The scans have shown that it isn't anywhere else 

I'm just waiting for feeding tube to go in and to have the radiotherapy mask made

They've offered me a trial which I have to let them know on Monday if I agree and its also dependent upon the staging and something else which I've forgotten 

Without the trial my treatment is 7 weeks radiotherapy and 3 weeks of one session per week of chemo

It's seems strange not being scared anymore and just sort of accepting now

Thank you xxx

I am sorry to hear of your diagnosis- I had the same diagnosis in April 2017 . I had one surgery to remove my good unaffected tonsil as a precaution and then a second surgery to remove my cancerous tonsil and a tumour on my lymph nodes. I then went on to have 6 weeks of radiotherapy with the mask and two lots of chemotherapy. I was extremely lucky to receive an all clear in December of the same year. I know it’s all very scary to you now but I’m certain you will get through this. The treatment is very affective. There are some  side affects and eating and drinking is tricky when your throat is sore - I had loads of high calorie milk shakes and ice cream. It will all pass - just do one stage at a time. I am sending you best wishes and positivity . 

Hi, 

I'm sorry to head of your news and see that this post was from last year and so I hope that you are in a better place now? Also nice to see the positive comments that you received at what must have been a very scary time. 

I hope you don't mind me asking but I wondered what symptoms that you had? I have this week had a layngoscopy due to blood in mouth every morning that I wake and they found an area bleeding behind my right tonsil and have taken a biopsy. Although I will remain positive, you always think of the worst case outcome and I have now read that ear ache comes with tonsil cancer and I have been experiencing earache in my right ear for some months. In fact, I went the doctors last winter with ear ache and then a sore throat. And tend to have a sore throat occasionally and wake with dry mouth for the past few months. Stunned because I thought the blood.musthave been coming from my stomach as they put me on acid tablets but the barium swallow dis not pick up much other than mild reflux. 

I hope you don't mind me asking ,  especially when I haven't had my test results yet but I am a worrier and the four month wait to get this test saw me go a little gaga with my thoughts. 

Hope you are in a better place and that you're treatment was a success xx