Hi, Anybody else with this cancer? I was diagnosed 1/12/17 and treatment started 18/12/17. Entered a trial, 25x weekday daily radiotherapy plus 5x Chemotherapy. OK until start of week four, but had to start co codomel last night. Appetite has gone and forcing the fortysips down is a real problem, but have found thin porridge with honey to be good. Really find pureed meals inedible. I know it is only going to get worse over next four weeks. Any tips or thoughts. Thanks.
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Hello John. Sorry that I cannot give you advice on your problem but wanted to say hello and let you know that it is not the case that nobody was interested in your post - but maybe the person with the right information has not yet seen it. I feel sure you are going through a rough time and that Christmas was not a great one for you. If you don't get any results other than the good wishes which I am sure people feel for you then you might like to copy your post into the Ask the Nurses section so they can help you. Best wishes.
Hi AnnieLiz, it really was very kind of you to take the time to reply. Mine is classed, I believe, as a rare cancer, so I was not expecting immediate responses. It is a tough time, but at least it was me who contracted it, not one of my family.
I am very positive about the outcome and am receiving the best possible from QE Birmingham. Hopefully I can provide useful input to other contributors.
I was diagnosed with tonsil cancer on 1st December 2017, I am 60 female and live alone in France so was shattered by the news. I underwent a neck dissection on13th December, I was in hospital a week and have of yesterday been given the outcome. I had very aggressive cancer on my tonsil but the 12 lymph nodes taken were clear, great news the cancer has not spread. I see the Radiotherapist next Friday meanwhile my Stomologist is making an appointment with a Chemotherapist as I need to have both. I had a couple of weeks of pain and lack of swallowing after surgery but feel fine and am back to normal now. I am dreading the radio and chemo, living alone I am not sure how I will cope. I have a friend who wil take me back and forth for the treatment but the side effects etc scare the hell out of me. I have been supported by Cancer Support France who help Brits over here with cancer, they have been excellent. I have a good Polyclinic 15minutes away and they have a new radiology machine up and running as of this month. I am staying as positive as I can as a new grandson arrives in Australia this month - had to cancel my trip! but will meet him at some point this year. I have literally trawlled the internet for info as although the treatment I have had and my surgeon are great I am finding I am lacking information and support. My local GP has told me I can ring anytime but I do feel a bit isolated. If there is anyone out there who has been through radiotherapy and chemo for tonsil cancer I would love to hear from you. John54 keep positive, tomorrow is another day, one day at a time - no need to worry about what may not happen eh?
Hi there John and welcome!
My husband was diagnosed with SCC tonsil plus lymph node mets in December 2015 . He is now in remission following treatment - 30 fractions of VMAT radiotherapy and 5 cycles of cistplatin chemotherapy. He unfortunately still needed a neck dissection afterwards but is niw in remission. I am happy to chat and so if youd like to message me that would be fine.
John and les
welcome to the club that no one wants to join .... it’s a special club though full of very special people
i was diagnosed with throat cancer and am now 3.5 years post treatment
i wrote a blog about my whole experience
it guides you through the process I went through, what I had to deal with and the many wayand changes I had to make to get through it
it also gives advice on recovery and the after effects of the treatment
shout if you have any questions and I hope it helps
So glad the members of the very small tonsil cancer club are getting in touch to give you support. As you say it is like being hit in the face by a brick wall when you hear the words. We had no idea it would be cancer and as a nurse I had never cared for anyone with it either. My hubby is a fit,non smoking , tea- total , vegetarian so it was even more if a shock.
Well done for getting this far as the treatment is no walk in the park! You say you are about to star your last week and I gave to say it does get more difficult for the next 3-4 weeks. My hubby had a RIG - feeding tube - and was probarbly only managing soups and high protein drinks by now. This did deteriorate and as we were warned he couldnt eat at all by 10 days post finishing radiotherapy so had a feeding pump to provide his nutrition. As for the pain again this steadily got worse and so we went from dispersable co codamol to oromorph and fentanyl patches to control it.
He lost all taste except fir bizarrely celery ! This has very slowly come back to a degree however he says that its not the same as before - he had a really sweet tooth before but now if he eats something sweet it seems to switch his taste buds off . Consistency of foods have also taken time to improve ve- he always has water with him and ar first couldnt eat bread , cakes, anything dry - fruit, fruit juice etc. We found gluten free bread and wraps much easier for him to manage along with foods with sauces.
Have you tried mannuka honey ? We found this helpful as Pauls throat got more painful until he couldnt swallow it and he still takes it now.
Anyway please feel free to come back to me with any questions and wishing you loads of luck for the rest of your treatment.
Thank you so much for your reply and the details - I feel so much better and it was so worthwhile to me - I am at a bit of a loss and don't have anyone to talk to about it here in France and I don't want to burden my son at this time - baby due any day! Cancer support here is good coming to appointments but more on the what I can claim side of things more than practical info as to what to expect! You have added to my positivity and I thank you for that. I was just so unsure as to what to expect from the radiotherapy - not so much the chemo as I went through this with an ex mother in law. All your 'waffling' is wonderful news to my ears and very helpful. I have pre-empted the dry mouth and ordered tablets. Post op swallowing was hell but I found egg and milk and honey good to get down and healthy and fresh banana milk shakes. I am worried about weight loss - 5.3 and 7 1/2 stone - in old money lol - I have lost 5/6lbs which puts me now at 7stone and really don't want to lose anymore - have you had a huge weight loss? I have protein powder which I am adding to all my liquids, I was also pleased to read you had no nausea. Have you a mouth guard to protect your teeth? I was sorry about the NHS decisions towards you - I am well aware I am lucky here in France they have an excellent cancer care record and the kit is state of the art together with their specialists. I live 15mins away from the hospital in what is not a large town by any means but they have all the latest bling! Love your approach to treatment - I see I may be snapping plastic big time and become more than familiar with the Amazon delivery driver? Please keep me posted as to your own ongoing treatment and how you are coping and feeling, I think as individuals we are strong and it is our family who take the hit worse than us. I am thinking of you and know you will keep positive. Again thank you so much for taking your time to respond and reassure me, it means so much - best wishes to you and your family
Hi Emma, I really appreciate your getting back to me!
I must admit I'm feeling a bit of a fraud at the moment. I've had 20 radio and 4 chemo sessions and seem to have escaped lightly so far ( tempting fate, I know). I lost pretty much all sense of taste at the end of week one, turned into a mucus producing machine and am now largely limited to fortijuice and porridge - strange you mention mannuka, I had never eaten honey in my life, but my daughter bought me some at Christmas and I am now addicted. I had no pain until early this week and the occasional cocodomol has sorted that out. I am under no illusions, however, that things can and probably will change quickly, so am hoping for the best, but planning for the worst, over the next four weeks plus. As a Wolverhampton Wanderers supporter, I have had over 50 years practice with this mindset.
I have discussed your very useful food tips with my wife and have incorporated them in the plan of action. That said, any hospital that makes me endure treatment that means I enjoy celery, can expect communication from my solicitor.
Joking apart, I am really grateful for your input and that your husband is making good progress. I will be back in touch as any feedback/advice I can get from those who have been through what I am about to face, is invaluable.
Hi LesBeatrix, good to hear from you and glad you found some of my experiences of use. As you are aware, each individual reacts differently to the treatment and things can change quickly. You will see in my reply to Emma's post, that I seem to be having a relatively easy time of it at the moment, but remain confident that 42 years of my wife's cooking has prepared my digestive system for just about anything. Only joking!
Regarding weight loss, I came into the Tonsil situation on the back of seven months inactivity with a repeadedly dislocating shoulder. Immediately after being discharged from a rectifying op ( which I had to pay for as the NHS could not carry out until July this year) I went to see the Consultant who enrolled me into the Tonsil club. During this period of inactivity my weight went up to 16 stones, so I entered the procedures well padded, though at 6' 2" I can carry it off. I have lost only about 4 lb so far. In fact, I have got into trouble after each chemo session as I have put on too much weight during the procedure and naturally they are worried where it was going. I have always suffered with hospital and white coat syndromes - all bowel and urinary functions close down on the sight of either. Both return to normal when five miles away from the hospital, which has led to a couple of tricky moments when stuck in the Birmingham traffic. I am awaiting CCTV images from West Midland Police.
One thing I forgot to mention is the mouth exercises. If you have not started them yet, then do so - they have stood me in good stead. Also do not do what I did and forget to carry a large supply of tissues at all times - I have found the mucus merciless.
It is really good to chat with positive people who are at different stages on the Road to recovery - we can help each other get through a challenging time. Please keep your chin up and if it starts to wobble, let me know and I will hopefully be able to say something useful. Have to go, my wife wants an explanattion for the new camera just delivered by Amazon. I have decided to use my downtime to renew an old interest interest in photography, as well as booking the microlight training course I promised myself 30 years ago. I have no doubt you have plenty of distractions in progress or available, Australia in particular. Will write again soon. Keep smiling and keep me posted.
Hi Emma, this could be a whole new breakthrough. Tonsil cancer caused by stress of supporting rubbish football teams - nothing to do with alcohol or tobacco. It would be interesting to see a UK map of where this cancer is.
Hi LesBeatix, have just reread your post and a couple of things come to mind. First, was your first session yesterday - if so, how did you get on? No, I did not wear a mouth guard, but had to get the all clear at the dental hospital beforehand.
I should have mentioned the amount of medication you will have to take home - our house is like a Boots pharmacy. I have had to find room for seemingly vast quantities of pills and potions, most of which have not been needed. The real pain was when the pharmacist delivered the first monthly quota of fortijuice drinks - 120 bottles!