Tonsil Cancer - Newbie

hi laura, my hubby was diagnosed with the same as your dad, right hand side, on 31st dec 09, he had tonsil removed end jan 10, followed by peg insertion end feb, radiotherapy and chemo started 1st march, he had 5 xcisplatin and i think it was 33 rt sessions over 6.5 week period.

the good news is this is a cancer that can be treated very well, to be honest the bad news is the treatment they use is very harsh, everybody is differant, but my hubby was very ill, by week 3 of r/t he was struggling to eat and drink, and we started using the peg to suppliment what he could manage to eat, by week 4 everything was going through the peg, meal replacements, medication and all fluids., and i fed him via the peg for nearly 5 months.

by week 3 he started producing a horrible thick mucas, by week 5 i was buying 5 boxes of tissues per week, we spent 5 months sleeping downstairs, me on the settee, him propped up in an armchair with footstool , i say sleeping but we didn't do much of that as he felt as if he was choking with the mucas , they do normally warn you about the mucas, what we were not told, and i suggested to part of the team that they should, is the awful smell that the mucas gives off, i could get in the car the day after he had been in it and the smell was still there, the same goes for the house i'm afraid.

the treatment really knocked the stuffing out of him, he went from being a strong still working 68 year old to a weak broken 69 year old, BUT  we are coming up to a year from end of treatment and he is out playing his golf, we are laughing again , he is not as strong as he was, and probably never will be, he still has no saliva or taste, but he is eating "normal " food, not a great variety, but everything going down his throat, and the peg was removed last october once they knew he was eating enough to keep his weight up.

i would strongly reccommend your dad thinks seriously about pushing for a peg, even if it isn't used a lot at least it will be there if needed, we never used the pump they supply, i did it all using disposable syringes, bit like having a baby on 4 hourly feeds, but my hubby put on a stone during treatment , not many patients can say that, and now he is nearer to his usual weight, but still about 4lbs heavier than before treatment started.

hubby never lost his voice, but it did become raspy and quiet for some weeks, but as you start to come out the other side of treatment it started to get stronger, and i would say its back to normal now, the lack of saliva is very draining, hubby has artificial saliva sprays and gel, and always has water with him.

there are probably lots of things that you might need to know as treatment goes on, if it is something i can help with please don't hesitate to ask, if i don't know somebody else here will , i know i have painted a very gloomy picture, and of course that is our experience, yours might be a lot easier, but if you have an idea of what might happen you are at least prepared , wishing your dad, and all your family the very best wishes, my thoughts are with you all  linda xxx

Hi Linda, Thank you for your reply.  It's reassuring to hear about people like your husband who has had a good outcome and it was really helpful to get that insight into treatment.  We'll start stocking up on hankies and bottles of water!! You must have been an excellent nurse to your husband for him to maintain his weight!  At least we sort of know about the possible problems to expect from side effects.  We were told by the consultant that treatment is a lot harsher than it was 10 years ago so weren't expecting it to be easy going but at least we can go into it better prepared.  Best wishes to you and your husband.  Laura xx

My husband Mike got through 30 sessions of RT following very major surgery for tongue cancer.  He did get through without a PEG, but it was hard work and he lost 3 stone.  Luckily he was rather chubby to begin with!  He had treatment both sides and to his tongue, so the pain/mucus did get pretty bad.

He couldn't speak during the worst bits, and had to write notes in a little book.  But he's talking very well now.  My only tip - given that everyone responds differently, is make sure to get adequate pain relief - that's what morphine is for, and to ask for medication for nausea if that becomes troublesome.

If you decide to go without the feeding tube, I can give you more tips, as that was the route we took.  At all events, good luck, and do post often for support if you need it.  That's what we are here for.  I never forget the kindness that people showed to me.

Cathy

i was treated in 2002 for cancer in one tonsill that had spread to a lymph node, i had a tonsilectomy followed by a RND and 7 weeks of RT and concurrent chemo.

I would recommend the PEG tube, it was a pain to keep clean and i didn't actually need it until the latter part of my treatment. but without it the experience would have been a whole lot harder

It is a real chore trying to eat food when you can barely drink, add to that the fact you are feeling crap and the food has no taste or smell. eating is the last thing on your mind, thats when the PEG comes into play - not great but better than the alternative.

The mucus was not such a problem for me - we all react differently but neither i or the chap who was being treated alongside me had any real difficulties with mucus, yes it did thicken up and was like chewing gum at times but it did not stop me sleeping. I did use salt water, corsodyl and biotene mouthwashes and these helped me through.

hi laura, im so pleased i didn't send you running screaming from my post , lots of things happen and if you are prepared for them i think it helps, for a long while my brother in law kept asking me if there was something we were not telling him, hubby looked so dreadful at times i know his brother thought the worst , but at least i could try to reassure him that what he was seeing we had been told to expect , but even with that knowledge i had dark times when i thought the worst myself , this is as somebody else said a truly harsh and horrid treatment.

not quite sure about the nurse bit , i think it was just a case of "getting on with it"  although hubby has said he could never have got through it alone , and we have both thought how hard it must be for anybody who is by themselves, our hearts go out to them.

as cathy has said pain relief is a priority , i'm sure you will find your medical team will do everything they can to help and guide you, don't be afraid to ask for and use anything they prescribe, and if it doesn't suit your dad go back and ask what else is available , my hubby was a 1parecetamol person, but he went from using that on to co-codamol and then morphine, some of these medications can cause constipation, so again ask for something to help, always make sure you tell the drs you need either a liquid or soluble type, surprising how often drs "don't think " hubbys gp was going to prescribe good old co-codamol in tablet form until i intervened , have you seen the size of them ?

also if at any time you think your dad is very poorly DON'T  hesitate to get a home visit from gp,  he doesn't want to go to the surgery during chemo and radiotherapy, his resistance will be so low he could pick up anything , or, and i had to do this a couple of times, phone for an ambulance, once you tell them what your dad has, and treatment he is having they are more than happy to come out, especially if you have been refused an out of hours visit from the night service that covers gps, yes it did happen to us , and i ended up following an ambulance up the m20 at 5am one morning.

hopefully things like that wont happen to you, but be prepared to fight his corner, lots of things you might go and buy, latex gloves for example, the district nurses will give you if you ask them, saline sprays and sterile guaze, needed if he does have a peg fitted, can be put on a precription, and see if you can find a chemist that delivers prescriptions, you wont have the time to chase after them yourself, anything that you think will make things easier,try and see who can help .

please try to let us know how things go, you will always find a helping and sypathetic ear from so many here , i think that we have all needed and found that help, take care , good luck to your dad , stay strong linda xxx

Thank you all for your messages.  We are being positive about things and certainly after reading your messages, it makes it that bit easier to be positive! I am so glad to hear that you have all had good outcomes.

I think we are going to monitor the situation with the feeding tube.  My dad did ask about it but was told if he needs one he can get it so we'll play it by ear and see how he gets on.  We've also now got a start date for treatment so we don't feel so much in limbo about everything.  He's also had a mask fitting and been told that he doesn't need to get any teeth removed before RT so all good there.

I suppose everyone is different about how they are affected by the treatment so we'll just take it day by day and deal with side effects as they come.  Your tips are helpful.  I'm sure I'll have more questions once treatment starts.  Thanks again!! Laura x

hiya laura...thought i wud share our story...trev, my boyfriend, age 37 ..was diagnosed with cancer of the tonsil and lymph node..right side of neck ..in july 2010 (had been misdiagnosed for 10 weeks but thats another story!!) 

he had wisdom teeth removed...a PEG inserted and also a trachy tube inserted...due to sheer size of the tumour.   he had intensive chemo over 3 cycles....one week on 2 off.  (cistplatin, 5fu and doxytacil ...or summat like that!)  hair didnt come out til day before cycle 3!!! tumour begin to visibly  shrink 2 days into chemo!! was amazing. chemo was up and down.. after first cycle. he was fighting fit...he caught a bug during cycle 2 and his blood count depleted during cycle 3 and he collapsed ...but he got thru it!!

over xmas he went thru 35 sessions of radiotherapy...with one chemo during the week. managed well til 3 weeks in....then got sore xmas week. did well tho. started to use his peg during week 5.  he recieved excellent care at james cook hospital reg pain relief etc etc and mouth care and this has helped a lot. the skin on his neck did burn...but with the right cream this eased and  exactly 4 weeks after its completely healed!!!! he did have mucus issues for the first week after radio ended but thats also stopped. his mouth was a little dry  in the beginning and he was coughin up mucus sometimes but he s managin really well. lotsa water.!! he s started back eating what he can...and somehow has managed a chinese take away and pizza! dont know how like!! he s at the min gone back to putting his drink s thru his peg...just totally gone off food at min...but thats him regardless of cancer. just wants to get his calories up...super noodles are his best friend! its jus tover 2 months since all ended and he can eat and drink anything...when he wants to. except very dry things. his mouth is gettin. from diagnosis to now he s lots a stone. his hair is growing back...and not an afro in sight. we re off to see the consultant on thurs for a check up so fingers crossed. has had one last month and things seemed positive.

 life s carried on pretty much as normal...we ve been determined to do so!!!.he s been back dj ing and having the odd pint. we ve had some nights out...his speech is back to normal...and he only had about 2 weeks not eating solids....then super noodles bacame his best mate . he started back to work today...been off since july! and he s loved his first day back!!!

it is a hard journey..and sometimes u dnno how yr gonna get thru it all....he s said this and also i feel it as his support....but u do get thru things....and the little positive steps mean the world!!!

if u want to chat  please feel free!

lisa x

Hi Lisa.  Thanks for sharing your story.  I'm glad to hear things are getting back to normal for you both.  It really means a lot hearing all these positive stories.  

My dad's treatment starts next week.  1 dose of cisplatin on Monday (then 2nd dose 3 weeks after) also daily RT from next week.  How was the fatigue from RT?  Was your boyfriend still able to drive / get out n about? 

Good luck for Thursday.  Keep me posted how you get on.

Thanks again!! Laura x

Hi im 27 just been diagnosed for scc tonsils and lymph. I get the feeding peg fitted wednesday 15days after having my tonsil removed. My dental appointment next week and my treatment starts after that I am aving rt and chemo im really worried about the weight loss etc and not been able to eat. As I am tiny any way. Also im scared that its all going to be to much for me to handle x

I had the same thing diagnosed in December and have had chemo, Cisplatin and RT for 6 weeks.  The treatment is very hard and I had a feeding tube put in just in case.  I did have to use it at the end of the treatment as my mouth was very sore and I had thrush and was generally not feeling very well at all.  It is hard treatment and builds up over the weeks so you feel worse at the end but you can get him through it be just being there and encouraging him to drink and eat as much as possible and to keep up his strength.   I live on my own and my mum came to stay with me and helped no end by just being there and encouraging me to go for walks and to eat and drink regularly.  I know everyone is different but I slept an awful lot during treatment and I found that the only foods I could get down for a while were porridge for breakfast (runny) and chicken soup and mushroom soup.  I found anything acidic would burn my mouth so I couldn't eat fruit or anything spicy or strong in any way.  I used my feed tube for a couple of weeks to supplement my eating which I just could not manage most of the time and when I did eat, it was very little as I had no appetite and with a sore mouth too it makes you not want to eat.  My voice was quiet because my saliva went very thick and it was hard to clear it, I was sick a lot but that might not happen to your dad.  I have kept drinking lots of water and do  have a very dry mouth so need to take water everywhere I go but my taste buds are coming back slowly but some foods just don't taste the same any more and I cant manage eating anything dry like crisps or crackers yet.  I hope this will get better over time but I am only 2 1/2 months post treatment now.  I have just had the tube removed and that has made me feel much better physchologically (cant spell that) and I am now waiting for the scan in July which will tell me if the treatment has worked or if I need surgery on the lymph node in my neck.  Keep positive and make sure he uses E45 cream on his neck before and during treatment to help his skin as the treatment can cause sun burn like symptoms and I was very sore by the end of RT. Good thing is the treatment is not painful and the RT usually only takes 10 mins or less each time and chemo is longer but I didn't have any side effects apart from the tiredness.  Good luck to your dad, if I can get through it, he can xx