Hi, well having looked at various web sites I stumbled across this site this morning and it was a relief to find other people who have gone through and are going through similar problems to myself.

I was diagnosed with throat/mouth cancer (basically where my right tonsil used to be and both lymph glands) in November 2007.

This came out of the blue as I don't smoke etc but the team at Christies were great and I started the first of 4 Chemo sessions in december (Chemo for 6 days, rest for 2 weeks x 3) and then 20 sessions of Radiotherapy which i finished about 5 weeks ago.

Amazingly the chemo was a 'walk in the park' compared to the side effects I'm having with RT.

On the second RT session my mouth just dried and whilst everybody was saying the side effects should start after session 7 or 8, mine started on session 2 but i was told my Chemo session, which overlapped the initial RT session, may have been a factor in this.

To cut a long story short I had raised temperature and had to go back into hospital for a week during RT treatment and whilst i was in I had a feed tube fitted via the nose.

I'm a big lad to say the least and the weight loss wasn't a problem for me but it seems to be for everybody else.

Thrush and ulcers prevented me from eating and I was given Nystatin, Flucoxin? and Difflam mouthwash.

I have now had the feed tube in for 7 weeks and it is now causing me more problems as I am rehgularly retching due to the build up of mucus and I have now decided to remove the tube this coming friday.

The mucus is constant and if there are any suggestions to deal with this please feel free to point me in the right direction.

I also think I have Thrush again as the coating is at the front and back of my mouth (but not in the middle section?)so I'm off to the doctors to try and sort that today.

I was told to use the bicarb mouth wash but should I be using salt with it too and if so how much?

Whilst I am ok with liquids via my mouth, and I am eating small amounts of food, the ulcers at the side of my tongue are still the main cause of me not eating more and I'm desperate for any suggestions to help here?

I'm also prone to biting my tongue in the night which just starts the problems again. I've tried a gum shield but becasue my 2 front teeth are on a denture, the shield just doesn't stay put.

I've been unable to tollerate the milk based protien drinks but i do use the Pro-cal supplement and have now just been given another high protien drink to try where I add my own milk.

My mouth is constantly dry and I'm drinking water like it is going out of fashion. I can drink tea also when the mood takes me.

My wife and family have been fantastic through out this but I am finding my patience is running thin at times as recovery doesn't seem as quick as I would like, but I'm sure I'm not on my own there.

I'm sorry if this post as just seemed like a gripe of my problems but if you can suggestion any solutions for any of the predicaments I would be grateful.

Cheers

Good morning MikeSam,
Welcome to MCF. Don't worry about your post sounding like a gripe,we are all allowed a few.

Your tale sounds very familiar but I will leave the advice to those better qualified to give such advice.In my case the surgeons were a bit heavy handed and there was nothing left to iradiate so I was spared this particular treat.

Whilst I am a Tyke I do have some connections with your side of the Pennines, I worked for a company based in Hazel Grove for twenty five years so I think I may just have a touch of a claim to being a comer in.
Keep Smiling
John

Hi mike sam i have had my 17 out of 33 radio sessions and the second chemo today, as for your probs try drinking hot water that has been boiled it seems to work for me as for the feeding tube through the nose tomorrow Thursday i am to have a peg fitted in to my tummy where one injects the fortisip drinks as well as drinking them normally to kep the swallowing motion going.. if you have anything else i can help you with you can mail me @ carlseal@hotmail.com

Hi Mike
It will improve i to was frustrated and at times still are but it does improve with time

i used and still do use bioXtra toothpaste and mouth wash Orthana mouthspray stll drink loads of water and everthing is covered in a sauce also my GP prescribed salagen tablets which i do believe helped my saliva

Regards
Dave and Sue

Hello Mike

Please see these past posts about stringy saliva.

Best wishes
Vinod

thanks for the information on the salagen tablets and the tooth paste, I'll certainly look in to them and speak to my GP.

i appreciate all your comments and Carl s, good luck with the peg fitting on Thursday.

Mike

Hello Mike and welcome to the club where no one ever wanted top be a member. Your treatment is almost identical to Bill’s, my husband, also at Christies. He also ‘was’ a big lad, eighteen and a bit stone, now just under twelve, which I am sure stood him in good stead to tolerate the treatments and feeding - or lack of. He was diagnosed in March last year and is now clear but is still recovering from the effects of the r/t. We were told 6weeks all would be better which has now been extended to ‘12 month is reasonable’ so sorry, it’s a long bumpy road.

Everyone seems to fall during the r/t hurdle, Bill was also fitted with an ng tube during his stay in hospital mid r/t which he kept in place for 5 months, during which time he neither ate or drank anything – in fact I think it was like a security blanket for him, he knew he could get all the nutrition he needed through the tube. Don’t know if it was because he didn’t have anything orally but he has never suffered from thrush. He has kept fastidiously to the mouth cleaning routine of Bicarb and warm water, teethbrushing and rinsing with Difflam. He has only recently had the odd mouth ulcer.

Are you sure you can do without your tube? I think the mucus build up is fairly standard and not caused by the tube. There are quite a lot of links on this site re mucus, look on ‘Helpful tips’

Did you have the Jevity overnight feed? If you can’t tolerate the milk based protein drinks, I guess you must have tried putting them down your tube? There are several other protein drinks and soup types available, if you are going on Friday, I would ask if you could try something different.

Were you put on the Menuka Honey trial at Christies?

Guess that not a lot of help but I am sure there will be lots more to come from others.

Good luck and keep us posted on how you are getting along, and go gently on your wife and family. I know it’s very frustrating for you but they have been through a hard time too.

Angie

Hi Angie - thanks for all the info.

It seems the more I read on the site the more unrealistic i seem to be in pushing for recovery in such a short period of time.

I was speaking to the Chemo Nurse at Christies this morning and she agreed regarding removal of the tube on the understanding that if i can't maintain my weight (18 stone and thats after I've lost some from the initial treatment)then I would go back on the tube.

Fortunately I can drink water /tea and also eat a little and trying to increase the intake where possible.

I know I'm expecting too much from any magical cure or mouthwash but I know I would struggle to continue with the tube feed for much longer.

I didn't have any honey trial, is it any good and worth taking? (my wife loves it but I've never been a fan, but willing to try).

I had the jevity whilst in christies but then a different brand (name escapes me for the moment) once I was at home.

I appreciate the advice and hope your husband continues to improve.

Thanks

Hello Mike,
Angie is right this is definitely the club of people who never wanted to join. The dry mouth and stringy saliva is part of it and you will learn to deal with it as times goes on. Each person has to try different things. When I could eat after my first bout with this cancer potato soup was great, it didn't burn the ulcers and I was able to hold it down. I had to keep it pretty bland with very little salt. I also ate a lot of milkshakes, the coldness felt wonderful on my throat. As for the thrush, brush often, can't say that enough. Also try to use some type of small sponge to wipe around the inside of your mouth, especially on the tongue and roof of your mouth. Other than that is sounds like everyone else has said what I would say.

Be patient, recovery is slow but it will come.

Leann

quote:

Menuka Honey

Menuka Honey please give more details how is this supposed to help please.

Manuka honey has alot of healing benefits and anti bacterial agents. You can get it from Holland & Barrats and M&S. But get a high grade.
I added it to Ready Brek in the morning and it soothed my raw throat immensly.

Patience is important. &don't be dissapointed with yourself as the healing and recovery is a slow process.
I was off my feet for 3-4months after treatment. & for a healthy 22 year old i was dissapointed.

18months on a still notice improvements.

You're doing ok!

All the best,
Michelle

Bill was asked to take part in a 'Menuka' honey trial when he was having his first chemo treatment. He had to take two teaspoons full three times a day, not being a honey lover and Menuka honey has a definate different taste to ordinary honey, he wasn't overly keen but took it as long as he could untill in the middle of r/t he couild no longer swallow and was admitted to hospital with dehydration (this was less than 12 months ago but now seems like a lifetime since) We still dont know whether he had the placebo or the real thing but we have done some blind tastings and it certainly tastes like the real thing. Apparently Menuka honey has wonderful healing properties and as Michelle says, it would be very soothing to a sore throat. I recently made some into a hot toddy with whiskey, spices and lemon, dont know if it helped cure my cold but certainly made me feel better!

Tomorrow we have our monthly visit to see Dr Slevin, who said he would have some results on the trial so will see what he has to say.

Link to past discussion about: Manuka Honey