Well, I will be thinking of you as I know what you will have to put up with, and the next couple of years will be tough.
Big Bear Healing Hugs

Thanks for your concern.

Take care

Harry

[Harry,
just picked up your post-tonsil cancer and pc virus must go together!
I finished my traetment at beginning of September and now able to eat rice pudding porridge soup- you know the sort of thing!
Am able to do all my sports but not well!
Just being out there is good enough.
Still using my PEG quite a bit and my weight is stable now (lost a stone)
My only problem is I am kept awake at night because of a very dry mouth any suggestions?
Cheers
Anne

Hi Anne and Harry

I too had the terrible dry mouth thing - biotene toothpaste, mouthwash and gel work well. I also have tried one called bioXtra which is a bit more oily and it stings a bit when you first spray but it is effective.

During the day chewing gum helps (biotene make that too).

I am pleased to say that mine started to improve recently (9 months post treatment) and whilst not quite back to normal, it is definitely more comfortable.

Best regards to all

Rosie

Hello Anne

A dry mouth often develops if a major salivary gland has been irradiated. You may find the Biotene and BioXtra range of products of help. As your saliva flow may remain much reduced, the mouth gets dry. Sucking sugarless lemon drops (e.g. SST pastiles ) or chewing sugar-free gum (e.g. Orbit) can stimulate natural saliva flow Luborant, Salivaeze and Glandosane are artifical saliva substitutes. Saliva substitutes can be used before meals. Some like Salva Orthana and Luborant also contain sodium fluoride which helps prevent tooth decay. Medication (e.g. pilocarpine/Salagen) is sometimes effective in stimulating any residual salivary gland activity.

Several are available through your GP on presecription. See:NHS Prescriptions (UK)

I hope that helps.
Best wishes
Vinod

Hello Anne

So glad you got in touch!

My situation sounds similar to yours. I am able to eat slushy wet foods but without any active taste buds or saliva glands its difficult. Still get most of my nutrition through the PEG.

Have you got any synthetic saliva (sounds awful doesn't it!!) My GP prescribed Glandosane which comes in a 50ml aerosol. It works reasonably well, only problem is there's not a lot in a 50ml spray and I tend to get through it very quickly. Either your GP or Oncologist should be able to give you something to help with the dryness.

Glad to hear you are back playing sports (you must be one hell of a determined lady!!), I am not doing much of anything yet!!

I hope you continue to improve in leaps and bounds. Take very good care of yourself.

Kind regards

Harry

Hi Rosie

Many thanks for your advice, I'll try some of the things you recommend.

Nice to hear from you.

Take care.

Harry

Hi Vinod

Thanks very much for the information.

Kind regards

Harry

Hi, everyone. This has been an eye opener for me. I haven't been diagnosed with anything yet, so i will make that clear, but i am very concerned about my problem and i am going to ENT doctor next Friday.
My problem is in one of my tonsils and whilst i know people have different symptoms etc, i was really just wondering if people with tonsil tumours, cancerous or not, could let me know what their symptoms were to start with, and how the tonsil looked, how fast it grew etc etc,. I just sit here and worry myself sick sometimes, so whilst i know its not cut and dry, if peoples symptoms aren't like mine, although i don't have many really, it may just help me to focus.
I have really felt like ringing the samaritans sometimes, even though i know they can't really help.
Thanks for any info anyone can give me

well actually from looking on the net i realise it may not just be tonsil cancer as such but lymphoma even.
I'm just rabbitting on really, just trying to pass the time.
Sorry and thanks for any help or advice anyone may be able to give.

Sedge

Stop worrying. Go and do something with friends/family to take your mind off, or read a book or watch a DVD.

We will be here if you need us.

Best wishes
Vinod

Hi Sedge

I know exactly how you feel.

Back at the end of May I noticed a small lump on my gum. Went to GP, who thought it was a cyst and gave me penicillin. A week later it was just the same, so saw another practice doctor who said she thought the left tonsil looked odd and referred me to specialist.

To cut a long story short I had an agresssive squamous cell carcinoma on my left tonsil. The doctor told me although it was agressive and too advanced to remove the tonsil, these types of cancer respond incredibly well to treatment and there is around an 80% success rate.

I have had seven weeks daily radiotherapy (excluding weekends) and two chemotherapy sessions and last week the oncologist at Maidstone oncology centre pronounced it gone! So I am in remission :).

Do try not to worry too much (I know only too well that's easier said than done), if it turns out to require treatment you will be amazed at the speed things happen and the level of support you receive is unbelieveable.

I do so hope it turns out to be nothing, but please let me know how you get on. My email address is harry@17alders.freeserve.co.uk, please feel free to email me direct to ask as many questions and queries as you like.

The very best of luck for Friday.

Take care.

Harry

Hi Harry,
I had cancer of the right tonsil, diagnosed in October 2005. Best of luck with the treatment, but make sure that you have friends and/or family to support you through the re-cuperation period after the treatment. I foolishly expected to be up to full strength within a few weeks, but I'm only just about getting there one year on. Take each day as it comes, and make the most of every day. Best of luck with eating, I eat a lot of supernoodles, and pasta carbonara, but for a couple of months you are going to be eating cardboard!

Hi Jenny

Thanks for taking the trouble to get in contact.
I am really pleased to hear you are doing so well.
I am now three months post treatment, still have no sense of taste nor saliva glands, but joy oh joy, the tumor has gone!!
Thanks for the advice, I am still getting nutrition from PEG tube. As no saliva, I can't chew and swallow as food just sticks in my mouth. Can only swallow very runny food and then there's no taste, like you said, cardboard!! Hope I regain some sense of taste and saliva, but I've been told it can be up to a year before you can be sure if you are going to regain anything!
I hope you continue to recover until you are back to normal.
Take care.
Harry

It was about a year before my taste recovered Harry but the saliva thing is a different story. You will get some saliva back but like me, you may continue to get very dry when you sleep and if you are talking a lot. It still bugs me but i'm pretty much used to it now. My sense of taste isnt quite as sharp as it was but I can taste 90% of things ok.
I found one of the hardest things to do in that first year was coping with the depression because of the side effects of the treatment which are pretty severe really and I had no idea just how it would effect me. My consultant played it all down.
Three years on though and i'm doing ok and my single biggest problem now is dental care. Ive had a few teeth out recently and I tend to get a couple of gum/mouth infections from time to time so I need to use antiseptic mouthwashes quite freqently.
At the end of the day I cant really complain too much as i'm in reasonable good health.
Good luck with your recovery Harry.