Mouth Cancer

Hi sorry to hear about your brother ,i am in recovery from cancer of the tongue with lymph glands being involved although i did not have surgery i had chemo and radiotherapy and one of the side affects is an ulcerated mouth and throat .Does your brother have a feeding tube fitted ?.I found it impossible to swallow never mind eat or drink for 6 weeks after treatment and i am only just starting to eat and drink normally now 12 weeks after treatment . i had a RIG fitted straight into my stomach before treatment so i could have liquid nourishment and water .I suffered with a lot of thick mucus and was constantly spitting it out .Has he got a specialist cancer nurse ? this is who he needs to speak to about any problems .Problems with the mouth after chemoradiotherapy are normal but do get easier with time .

HI I am sorry to hear you had to go through this as well. The surgery was horrendous, but nothing like the chemo and radiotherapy effects. No he doesn't have a feeding tube they have spoken to him about it but the last one he had when he was in hospital took 5 attempts and he said it was so painful he doesn't want to go through that again. I am not sure about a specialist cancer nurse, I know during his treatment he had a meeting every Thursday.

Is there anything you found easier to eat ? I think we have tried just about everything from babyfood to icecream.

You mention the ulcerated mouth which he has but he is now saying there is skin coming off from inside as well, not sure if that is normal or we should be concerned about it.

He has also starting to refuse to talk and stating the tongue isn't working !!

Hi Steve, well done to your brother for finishing his treatment. How he is feeling now is to be expected, the treatment does knock you sidewards and takes a lot to get over it, recovery can be a long, drawn-out thing that can't be hurried. Does he have a feeding tube for overnight feeding, if not he should discuss this with his team, getting enough nourishment and being hydrated is essential to help with his recovery. Get him to discuss these things on his next review, if he doesn't have a review coming up, he can give them a ring and they will probably see him sooner.

Ray.

There should be someone there for him as a first point of contact usually it is a SCN or specialist cancer nurse they quite often are macmillan nurses its really essential that you find out who his point of contact is, as they can get any problems sorted quickly .There are different types of feeding tubes mine was a life saver because i could not swallow full stop .If he can swallow ,liquid meals are good I was and still am taking fortisip which is like a milk shake with all the essential  nutrients in i mix these with milk and high protein yoghurt. Or anything that can be blitzed into puree protein is important because it helps repair the damage done by radiotherapy .The fortisips are provided by the NHS so cost nothing .Skin peeling in and out of the mouth is normal .

Hin Steve  has the others  have said he really does need nutrition and hydration to enable his recovery. He should have a dedicated cancer nurse plus a dietician . I had tonsil cancer and my ng feeding tube  was my lifesaver and enabled me to make a good recovery. He may also need a mild course of anti depressants it’s quite common in head and neck cancer patients to feel despondent , our mouths are a lifeline to everyth)ng we do. Is he taking pain killers for around 3 months I was in 30 mg cocodomol and oramorph which helped with yeh ulcer pain plus I was given gelclair. Is it possible yiu can go with him to his next appointment ? As often an extra pair of ears help. I know I didn’t take in everything that was told to me but my husband was also there and he took notes as well. 

Hazel,x

By the way dont worry too much about weight loss i lost over 3 stone in less than 3 months its quite normal to lose over ten percent of your body weight 

Holidays said:

By the way dont worry too much about weight loss i lost over 3 stone in less than 3 months its quite normal to lose over ten percent of your body weight 

That depends on your BMI to start with. I was told that if I lost 10% I would be hospitalised. 

Hi Steve. You mention your brother has had a 75% glossectomy. Did he have a reconstruction? If he did then it’s no surprise his new tongue isn’t yet behaving itself. This all takes time 

He would recover much more quickly if he was properly nourished. As others have mentioned he needs to be tube fed til he picks up. 
If he is under sixty years old there is a really good charity called Young tongues. They have a very active social media group with most of their members who are or have been in the same position as your brother. 

yes i suppose if youve got it to lose then 10 percent is ok but if your skinny to start with its not i was told by my nutrition nurse 10 percent was the norm i actually lost nearer to 20 percent