Hi Steve

Thanks for your message. It's really good to hear other people's recovery stories as it sets my mind at rest, in as much that I might get some sense of taste back eventually. The dry mouth thing seems to plague most people one way or another.

Pleased to hear you are doing so well, bad luck about the dental problems though.

Thanks again for the information.

Kind regards

Harry

Hi all, I am glad I ran across this website. I was diagnosed with squamous cell cancer of the tonsil in August of 2006. I have had Chemo (erbitux) and radiation which ended in november. Had a PEG tube for a while, anyone with that remember to keep swallowing, even water. I am about 7 weeks out and waiting to see if they got it all. Have dry mouth and no taste. Appreciate the openess of everyone on this site about sharing their experiences.

Ben

thanx very much harry..... you gave me a good larf i just hope i can be as positive when i get my diagnosis

jeff

quote:

Originally posted by Harry:
Hello everyone, I'm new here!

Have just been diagnosed with Tonsil Cancer . I have a tumor on my left tonsil. Have had head, neck & chest scans & thank God it doesn't seem to have spread.

Next week I get a PEG tube & a PICC line put in (deep joy! ) and they start on the radiation mask (so if anyone knows of an am-dram society which needs a male lead for Phantom of the Opera, I'm your man!!)

Treatment (chemotherapy & radiotherapy) is scheduled to start 5th June, daily for 7 seven weeks.

I'm trying to stay positive, am determined to beat this and aim to maintain a sense of humour .

Would love to hear from anyone who has undergone/is undergoing same and how they are coping, or if anybody has any advice I would be grateful.

Could I just draw everyones attention to a head & neck cancer forum at Head & Neck Cancer Forum Its a good site with caring people but not many visitors! Please check it out.

Cheers

Harry

Hi Jeff

Thanks for your mail .

I am now 6 months on from end of treatment. I had a carcinoma on my left tonsil and received 7 weeks daily radiotherapy and two treatments of chemotherapy (5FU & Cisplatin).

My tumor has now gone and touch wood, has not spread or reappeared. I have no saliva or sense of taste , but hope that some or all will return in the near future . Other than that, I am getting better almost daily. I did have excruciating tiredness shortly after my treatment finished, but this has gradually disappeared. I am back working part time, hopefully to return to full time in near future.

I know how hard it is to stay positive, especially awaiting diagnosis, but please believe that the medical profession can do some incredibly wonderful things for cancer nowadays .

If you want to ask any questions, or fancy a chat, do drop me an email at harry@17alders.freeserve.co.uk.

Will be thinking of you, all the very best.

Kind regards

Harry

Hi Ben

I had exactly the same cancer as you on my left tonsil. Seven weeks radiotherapy and chemotherapy - I had Cisplatin & 5FU - killed it off and now six moths from end of treatment, there has been no spread or reoccurance so far. Like you I have no saliva or sense of taste, but remain optomistic that some or all will return eventually.

Hope all continues to go well for you, keep your chin up.

Best wishes

Harry

Hi there! Why do we all seem to have cancer in our left tonsil? I also had secondary in left side of neck so had to have neck dissection too. I had carboplatin twice and radiotherapy for only four weeks. Like you still no saliva and taste is very off. I can taste all the chemicals in water and so have bought a purifier which helps. Now only drink earl gray tea as pg tips tstes so weird!

Anne W

Hi Anne

Thanks for your mail. Really nice to hear from you.

So sorry to hear about your problem. I hope you will soon get the good news you deserve. You sound like a very positive lady, so try and keep your focus on the end of the tunnel, although I know that's easier said than done some days!

Yes, why are so many carcinomas on the left tonsil? I've spoken to lots of fellow sufferers and I don't think one of them had cancer in their right tonsil. A mystery!

When did you finish treatment? My taste and saliva problems are identicle to yours. The specialist tells me most people regain some, if not all taste and saliva, but it can take a year plus, from end of treatment.

Hope your recovery continues apace and PG Tips soon tastes as it should!

Take care.

Harry

hi harry

many thanks for answer im very pleased to hear that you are doing so well.....it must have been hell going thro that and to stay positive like you have you must be a special chap........i hope that i can do the same as ive always been a bit of a nut....but i feel beat at the mo.....ive got sleeping pills and diazapam from doc but im sitting here looking at them wondering whether i should take them i dont like taking pills...... you and others in the forum have made me feel better by your posts and support and i wish you all the very best and a speedy full recovery.

take care

jeff

Hi Harry, I finished treatment at beginning of September and carried on cooking for a further two weeks! I looked like a skin shedding snake for a while.I had radiotherapy to both sides and I found it very difficult to eat. Thank goodness for my peg. It helped me through those difficult days even when I tried my hardest to eat, it was just too painful. I still struggle, as my swallow is not brilliant and as you know the saliva problem doesn't help. My weight has remained steady now so I need to get used to my new slim self and try and find clothes that fit me!
Time for my hot chocolate!
Keep smiling
Anne

hello, im the wife of patient diagnosed with head and neck cancer(right tonsil) in 2000
he underwent chemo and radiation but no disection. i wanted to stress to you all to keep on your doctors about tests, re-occurances that are missed can be costly. we were told we were free and clear, 5 yers out, dispite my husband complaining of neck pain, he was told he was fine. he wasnt, he is now on his third round of chemo. once again in 2006, and now started yesterday with our third attempt.

on a positive note, he is 7 years out, and still driving, and managing. the loss of saliva does in fact get better, its the radiation that damages so much of the tissue. try salavert or another saliva substitute.

also, the loss of taste will come back. his was odd at first, with his favorit foods being his least favorite, tatses seemed almost reversed. but that gradually changed as well .

i would encourage you all to check into alkaline foods, they keep your ph levels up, and can reduce the cancer from spreading, or even reoccuring. he was given 6 months in 2004 when they found the reoccurance, but we didnt give up, and almost 2 years later he is surviving, so please, dont give up, and stick with check ups. sit on your doctors about them, if you feel you arent being listened too,please get a second, even third opinion.

pleased to hear things are going well mattiemuffin and thanks for the food tip...i'd never heard of it so im off to look it up