Hi Paula

justbto,let you know i gotbthe resultant if my pet ct scan on Monday. ALL CLEAR whopppeee see oncologist in a year and local ENT every 3 minthes

hope you are ok

hazel

That is awesome news, congratulations! Thrilled for your news..xxxxx

Hi Hazel.

With regards the cause of my problem I felt that my immunity was badly compromised. I can kick myself now for that happening but does stress the need to eat well especially when excersizing and to take care. 

Congratulations on the all clear following the PET scan!  Brilliant. Well done.

I hope you have a great trip.

Paul.
 

Hi Paula

thank you ,will let you know if we are ever down your way x

Hi Hazel 

Not spoken before but I have followed your comments and found them extremely helpful so a big thank you for that and many congratulations on your latest results. Enjoy the break both of you. 

Ron 

Hi Ron

thank you so much for your kind words they mean such a lot,don’t knows if you are a fellow patient or carer  or just interested but either way thank you.

i also have a blog don’t know if you’ve read it where I ramble on in more detail ! Lol

www.radioactiveraz.wordpress.com

Hazel

Hi Hazel 

Yes I have read the blog and it was very informative and also from the heart.  I am 8 weeks post treatment for T2N1M0 right tonsil cancer, I had 30 RTs and 2 Chemo at weeks 1 and 4 . They changed from Cisplatin to Carboplatin for the second chemo as it aggravated a mild tinnitus i already had. I didnt have a feeding tube but lost quite a bit of muscle and strength as a result of the lesser calorie intake. In fact just tried a pastie and ended up having to remove all the pastry and eating the filling! Swallowing mechanism and lack of saliva is the main issue for me as the pain subsides.

Regards

Ron 

Hi hazel, I have found an excellent product for my total dry mouth thought you might like to try it then you can put it out there via your blog.. It's called XyliMelts all one word from a company called OraCoat, they are excellent for me... Paula...

Hi Ron

You are a little way down the road from me with very similar diagnosis and treatment. Although my treatment kicked off with surgery to remove my tonsils and some lymph nodes. Chemo was discontinued after a second round of cisplatin and which, like yourself, aggravated an existing tinnitus and made me a bit deaf... 'Eh wot?'   Thankfully that has resolved and pretty much back to my previous hearing ability.
Now starting my second week post treatment and hoping to see some improvement - any improvement! But was prepared for these few weeks after treatment to be bad. However it has not been as bad as the week after my tonsillectomy and neck op.

All I seem to do is foam with thick saliva and cough up phlegm from the painful area of my trachea. I am constantly tring to stop the phlegm running down on to my vocal cords. That makes sleeping difficult.
 I can barely talk and takes a little effort and preparation to force out the odd words to answer or get anything across.. 
 
You are still in pain after 2 months?  I appreciate everyones response is different. I have deliberately tried to kick the pain meds and find with the odd bit of paracetomol down my PEG I can manage ok.

How is your taste? My oncologist sad that it it should be improved 6 months out but that can take up to 12 months to resemble normality.

  I can swallow but it is a chore and tend to give up on anything quickly. No taste or appetite as such. I find milk ok. I  am surviving on Huel and water via my pump using my PEG. It is only just enough to meet my basic requirements.

I have been given tubes of artificial saliva but not even touched it. The radiotherapy treatment was shaped to spare the parotid gland on the opposite side to my affected lymph node. So far dry mouth has not been an issue.  Have you been prescribed artifical saliva? The pharmacist emphasised that it has been rubbed in to be effective.

Wish you better.

Paul