This is from John, my dear partner, who is NOT a wimp but really needs help!

I completed 30 daily radiotherapy sessions, for a small cancer at the base of my tongue, on June 16th this year.

My Consultant is very pleased with my progress, particularly with the surgical removal of secondaries (nodes) in my lower jaw � this was done 3 wks agao and I am now clear, save for a final check on a small loosely embedded tumour in my bladder which appears to have been removed successfully � just a routine check-up in this area is due next month.

A more sinister problem is now or has for a few weeks now raised it�s head with potential problems given that I am a well controlled diabetic (type 2)

The problem is nourishment or more particularly eating. I was warned that short term I would lose my sense of taste and that also, I would lose the function of my salivery glands � some of which would return to full working order, sometime. I have now reached the stage where:

�I cannot taste very much at all
�I have no saliva to help with the breakdown of food with the consequent problem of being unable to swallow.
�Food now, is abhorrent and the thought of it makes me want to wretch.

At present, I manage to drink 6 Calshakes a day, a bowl of porridge with honey, a cup of soup blended with broccoli, a pint of Guinness and usually some jelly with ice cream.

Despite this, the weight has been falling off me in a steady fashion to the point where I have lost about 20% of my original bodyweight. I have mini blackouts when standing up and actually fell over today (dog walking)

I cannot forsee any way that the foregoing can be remedied without the intake of more nourishment. My Nutritionist has urged me to try casserole type foods eg those with plenty of liquid, but, I don�t seem to be able to handle this!

Am I being a wimp?

Until this problem came along I was a healthy eater, enjoyed cooking both Indian and Chinese food on a regular basis. At present, all I can see is this negative spiral that I must halt before it becomes more serious.

Any advice would be much appreciated - thank you.

lizd, unfortuantly there is not a lot one can do. Everyone is different when it comes to this. I found that I couldn't bare to eat a thing for months. I only drank ensure and boost. I lost a lot of weight at first, but I gradually started to gain it all back. I drank those every 2 to 3 hours at first then I moved it to every 3 to 4 hours. I started with eggs, they tasted like salty metal. HORRIBLE!!!!! It was about a month afet the radiation stopped that I could force them down. It took me some time to eat again. I mentioned to another on the site, my Doctor gave me a drug called SALAGEN . It helped the salvia glands. It really worked for me. I did not have any salvia at all. My mouth would seal itself shut because of it. That really did hurt. I slept with a glass of water next to the bed at night. I took water everywhere I went. I NEVER left home without it. Good luck with this, please let us know how you are doing with it all. They say to try soupy dishes, but I just couldn't force anything down....Try the ensure or the boost. Don't get me wrong they don't go down to easy either, however they have all the nutriants that you will need to help you stay strong. Doc will also answer you I am sure on here. Keep in touch,,Vicki Lynn

Hello John (lizd)

Trismus is caused by damage to the muscles used for chewing. During surgery, trauma, or radiation therapy there is commonly secondary damage to the areas around the tumor site. As this damage heals, the body forms scar tissue at the site. As this scar tissue ages it becomes less flexible. These changes result in the limited jaw motion that is identified with trismus. Try using a Therabite to overcome the limited opening. It is a more expensive (or you might borrow one) than using the wooden tongue depressors but is more effective.

The mouth is often dry as a result of the radiotherapy. You can get Biotene samples of products that help with the dry mouth.You could also try sucking SST lozenges. Vicky has mentioned Salagen tablets that your doctor can prescribe to help stimulate saliva flow. The taste (and saliva flow) does improve with time with everyone having some variability depending on the radiation dose and portals.

The swallowing problem is best analysed by a speech therapist to determine what the problem is. Often the reconstructed tongue is not capable of the movement necessary to push the food against the roof of the mouth and squeeze it back to the throat for swallowing. A removable plate fitted in the roof of the mouth may help.

You can use the 'search' facility to look up previous postings and discussions related to these particular problems. Some of the others will have more advice about these problems.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thank you so much for your helpful advice - john will get back to you soon

Very best regards
Lizd

Dear Vicki Lynn-
Thank you for your very interesting reply to our post.(My partner Liz was the first to post as LizD.)

It always helps to know how others are dealing with """The Problem""".

I am seeing my doctor on Monday to discuss your very helpful suggestion regarding Saligen. It's potential sounds marvellous. I shall keep you posted.Very best regards - John G.

When I first started to be """weaned""" off the peg my dietician advised me to get a supply of """Pro-Cal""" on prescription. Its a powder to add to whatever you can manage to eat and provides all the protein and calories needed. I also take """Scandishake""" which is a delicious milkshake (again a powder to be made up with milk) and packed with calories etc. I haven't undergone radiotherapy so can't begin to imagine the awful difficulties with eating and swallowing that you are experiencing, although do have a whole pile of different problems!

Bon appetite!

Dear Brenda-

Thanks for your interest.
Quite excited at this end and a bit frustrated.

Excited because I'm seeing Dr tomorrow about a drug called Saligen which Vicki Lynn tells me is good for promoting saliver again. (You say you havn't had radiotherapy but you probably know it knocks out saliva production which does not help!)

Frustrated? - because I have got thrush in my mouth again!

Thanks again - Take care -

John G.

Brenda - should have explained if you don't already know - I'm also diabetic and as such am susceptable to thrush and other infections!!!

regards - John G

Dear Vinod-

Thanks for your suggestions - especially for Salagen - also kindly suggested by Vicki Lynn - seeing Doc tomorrow. Will report back later - fingers crossed!!!

Best regards - John G.

Hello John
I was told that during and immediately after radiotherapy the body uses over 4000 calories a day to rebuild damaged tissue. So basically whatever you eat it's simply not enough to keep weight stable when the body is eating your existing flesh to rebuild all that damaged area.

I also had and still have the same tasting problems ( now to amuch lesser degree) you describe. Should I say it sounds as if you are eating about 3 times the amount I was at the stage you are at. I was amazed at how much food you are managing. So this poor appetite is normal and it slowly gets better. I found double cream on everything helped lubricate it enough to go down.

I do think that rads affect the metabolism in some long term way. I am roughly the same weight as spring 2002, but am much fleshier than after the weight loss when I looked skeletal at a very similar weight of only about 4 pounds less.

Saliva gradually comes back some days after about 6 months, but is not as before. It is all a long slow job. Like you I also have problems with oral thrush a lot these days. But as I said to my GP last week I'd rather have oral thruah than be dead. We take the chance to live by having the treatment and then learn to live alittle differently. But yes it brings home how good and how much pleasure we had in food pre treatment.

My advice is to keep trying new foods once a week. I can see there are problems if you are diabetic as I now eat 50% sweet foods and obviously many of these would be off limits to you. wet foods are the best for me now and I can maage ome without liquid after 2 years but then need acup of fluid to make sure nothing is stuck. Some foods will only go down with 3 cups of liquid.

I think most of us get better simply by eating a lot of the same food that we can get down. Boring I know, but better than no food. I suggest you try doubling or enlarging the portions of fodd types you already eat. have you tried frozen faggots yet. They were suggested by the hospital for a liver portion. Its the only meat I really eat now.

Good luck.

Dear Pauline T
Thanks for your reply -

4000 cals per day, no wonder I'm skinny and no wonder progress is slow.I shall take my Specialist to task next Monday.

I take your point over diabetes but in fact we discussed this at length with all concerned (specialists,dieticians etc) all said forget the diabetes just pack in the calories. I have always got the impression from the dietician that packing in calories would enhance healing. You certainly seem to have born this out!!!!!

We are constantly told that we are all different and this does make it difficult for each to assess his own prognosis and improvement pattern.

I just hope that one day I might eat,again, gingered lobster and garlic with a decent glass of wine - (wine tastes like paint stripper at the moment.

The other thing that has come home to me quite forcibly is how delicate the balance is to make all systems to work properly. Any slight imbalance and it all goes haywire.

That's all for now -

Best regards - John G.