Hello to everyone

My name is Terrijane Burley, I have joined the site today because my Dad has base tongue cancer which has also travelled into his left lypmh node(did I spell that right ...). My Dad says he does not know what grade it is but the consultant told him that they have caught it in its early stages - after reading up on it, I guess he is stage 2. He is very positive and determind to fight this all the way.

My Dad was diagnosed end February 2007 and I have been reading all the info on this site for more information and how other people have or are coping with their treatment and life after treatment.

My Dad is a very young 59 year old who is fit and healthy and who does not smoke. So far he has had 2 cycles of cemo, where he had to stay in hospital with cemo pumping thru a drip continuously for 5 days, had a 2 week break and back in hospital again for the 2nd cycle of the same. He recovered very quickly to this treatment with few side effects which was a bonus. My Dad started his 6 weeks (30 days) of radiation treatment 2 weeks after and currently to date has 5 more days to go until his planned treatment is finished.

My Dad is still managing to eat but only very little, sloppy sugar puffs, eggs and my mum liquidizes a dinner, mash fish etc. But the last couple of days he hasn't been eating or talking much and his troat is hurting alot. The doctors gave him morphine yesterday to help the pain. He really doesnt want a tube thru the nose to feed and he is trying to fight it - I rang him this morning but he was in bed, which is not like my Dad so I think it is really taking its toll now.

Any help, advice or support would be appreciated!

Terrijane

Hi Terrijane
our dad sounds a strong and positive person.I have just finished chemo and Rt 55 grays
25 days ago i was in hospital 4 times unable to eat or drink fluids for 3 or 4 days at a time

That as paseed and i am still not eating enough food or getting enough calories.

you need the protein and cals to help you heal

i am at the hospital tommorrow when the nasal tube will be discussed and frankly if offered for a mounth or short period i will accept it

I lost a load of weight and still are

The tube will allow me to regain weight while still allowing me to eat mushy foods and progress

I was against the morphine but took the advice of the friends on this forum and it was a great help

the Rt will continue working even after treatment as stopped

The tube would take away the pressure of trying to eat for your dad one less thing to worry about and is only tempoary
Plenty of support here and from the forum

Best wishes to you and your family
Dave and Suej

I had a tumor and treatment similar to your dad. My oncologist strongly recommended a stomach feeding tube be put in before radiation, so I went with that. Not the most pleasant thing but easier then trying to eat by mouth. I lost weight anyway.

Three months after completing the treatment, I am still using the tube, mostly due to dry mouth. But I am making myself take in more by mouth. I find liquid foods easier. There are products like Ensure that are high in calories. Or you can make your own shakes with Instant Breakfast, ice cream, milk, fruit, ect. Yogurts are also a little easier to get down. These might be easier for your dad then solid foods that have been liquidized.

Hi Terrijane,

Welcome. My husband Robert was diagnosed with base of tongue cancer Sept 06. He was stage 1-2 and like your Dad had chemo and 6 weeks of Radiotherapy. You might like to read some of our posts (Lorraine E and Robert E) but don't let reading them scare you as Robert is now doing fantastic. He lost a total of 3 and a half stone in weight but Pauline on the forum gave him some great advice on eating. Although he suffers from dry mouth like most, he can now eat a large range of foods. It's an awful road for the whole family to be on but I'm sure your Dad is going to be fine at the end of it.

Hi Lorraine

It's nice to hear from you!

I am so glad to hear that Robert is doing fantastic. Wow he did lose a lot of weight - did he have the nasal feeding tube? How is his dry mouth now - does it stop him doing anything like sport (my dad did go on 26 mile bike rides each weekend and swim) or eating meat etc (sorry if this is an obvious answer, but I am still learning). I will read up on your posts and look at Paulines tips.

Thank you for your words of encouragment.

Terrijane

Hi Dave and Sue

I didn't know how to reply to your message as it was at the top of the page but I do hope you see this.

It's nice to hear from you! - I see that you are a regular on this site.

Thank you for your story and advice so far - I do like to hear how other people are getting on and copying during and after treatment, as you can learn from others.

It sounds like you are over the very worst and I guess as time goes on you except how life has changed and you just have to get on with it and staying positive and all that. I see you have a lovely wife who I am sure is right there with you every step of the way thru your recovery.

How did it go at the hospital yesterday - did you have the nasal feeding tube? If so please let me know how you get on wtih it, as I am sure my Dad will end up having one to.

Speak to you soon
Terrijane

Hi Ron

Again I do hope you see this as I didn't know how to reply to your message as it wasn't at the bottom of the page.

It's good to hear from you from across the water!

Thank you for your advice, I will pass this onto my mum - I did speak to my Dad yesterday and I am sure he will be having a nasal tube soon as he is finding it very hard to swollow anything now (mind you he did eat eggs and salmon yesterday.

So you are on your way to recovery, that must be a good feeling - how is that going? Have you got back to your normal everyday life as in going to work or exercising or is that still a long way off.....?

Terrijane

My mum's had major surgery to remove half her tongue, 3 weeks ago, and she has had a feeding tube ever since, although it is still classed as "temporary" she may need to have a stomach tube during any RT she may need.

She has not lost any weight, she is never hungry and her skin is glowing (she's also been to the loo every day - if you know what I mean). It's far from ideal, but it does let the body get on with healing itself whilst taking away the pressure of trying to force food down - which would have been impossible for mum after her surgery.

It's not such a bad thing to have a feeding tube fitted.

Hi Terrijane,

Yes, I hope I'm on the road to recovery. I'm 58, about the same age as your dad, so I guess we don't bounce right back like the younger people. I can see improvements in eating and activities, but not day to day. So I have a ways to go before I can do some of things I used to enjoy.

It sounds like your Dad is just about done radiation. That was the worst part for me, gradually feeling more side effects, yet knowing there were more visits to go. So tell him it starts to get better after that.

Let us know how he is doing. And I get back to you about my scan results next week. I guess this test anxiety is something we have to go through every few months.

Ron

Hi Terrijane,

Robert didn't have either a PEG or nasal tube fitted as his oncologist doesn't believe they aid in long term recovery. He explained that when someone has their tonsils removed they are encouraged to eat normally to keep the throat working. So although Robert lost a lot of weight and can now only eat small portions he can eat a huge range of foods including any type of meat. In fact he is away with work at the moment on the Isle of Harris and has rang me to let me know that he had steak last night. He chews Biotene gum and (a tip from Robert WT) sugar free gum which really increases his saliva. He is taking part in a trial and has his level of saliva measured so it will be interesting to see the results next time we go to see the trial team. He has always been very sporty and I think he has lost so much weight because he has lost a lot of muscle. He goes to the gym again now and swims and cycles and runs etc as he says it gives him a bit of an apetite but his stamina is very limited. It's a slow recovery process but he's definitely getting there and when I think how ill he was back in Nov and Dec I realise how far he has come.

Your Dad is definitely going through the worst at the moment, he will just need loads of positiveness and a fighting spirit. Just remember that he's going to be fine.

Hi Terrijane
You can check out the progress under first check up

unfortunatly the tube came out when i was sick its all in the post
my wife is fantastic and was my buddy and i would not be were i am here without her i love her to bits

Hope your dads improving but dont forget to look after yourself

Keep us posted
Dave and Sue

Hi Terrijane.
Liz here from Yorkshire.I have spent the last six months in Hampshire with my 44 year old husband who was diagnosed with tongue and secondary mandibular gland cancer on December 4th.He is now 5 weeks post radiotherapy having under gone partial glossectomy,bilateral neck dissection and removal of secondary tumour.The one saving grace for him was he didnt have Chemotherapy and i think this must be why he has had no problem with nausea and sickness.He had a miserable time with the radiotherapy which was targeting both sides of his mouth and also the floor and after just 15 days of radiotherapy he had an PEG tube fitted.This was completely trouble free and is still his only source of nutrition.But it was his life saver.Prior to the peg tube he had not eaten or been able to drink anything for some time and he lost 2 stone in an amazingly short time.Since the PEG was fitted 2 months ago he has only lost a further 8lbs and really it took all the stress out of nutrition,which at the end of the day is the one thing that gets you through this hellish treatment.At the worst times Rob was sleeping 18 hours a day and to be honest that is the best thing,a sleeping man is a man not suffering and is much easier to deal with.
As everyone has told you new things will arise every day and you will always be able to find the answers and advice you need on this site,so just hang on in there and good luck

Hi everyone

Thanks Winnie and Cookey for the info, advice and kind words.

Just an update on my Dad, he finished his last radiation treatment yesterday! I think he has still got his spirits up as he asked the nurse if he could take his radiation mask home and she said yes - It looks like a poor version of a superhero mask! And yes we have all had it on! I think this is a good sign and shows he isn't depressed at the moment, which can only be a good thing.

He is having morphine, a high calorie shot of 500cals 4 times a day (not sure what it is called), water, egg, custard & sponge, some cereal. He said he finds it difficult to get anything down due to the extra amount of thick saliva he is producing which gets in the way. This also keeps him awake at night, only being able to sleep for about 20 minutes at a time and then having to cough and spit the saliva out. He does sit up in bed but he says it doesnt really help. My mum said that he doses off in the afternoon for an hour or so.

When I spoke to him last night he did sound a lot better in himself and determind to get better now and in this words "its uphill all the way".

He will be having a check up once a week and also to be monitored as he is in the clinical trial.

I'll keep you posted!

Hi TERRIJANE
Salt and bicard was a tip i recieved from friends here as a mouthwash remember to rinse with water after it soothes the mouth

Difflan mouthwash is good for the pain and any ulcers
I think your dad as done great especially eating foods
im just over 4 weeks and will only be allowed some food next week thats good progress

Propped up in bed was another tip head to one side it dribbles out

3 weeks ago i was only sleeping 1 hour at a time having to rinse my mouth every hour
now its 2 plus

my consultant prescribed Zopiclone and now im sleep from 10pm to at least 2pm get up clean mouth then from 2 to 4 and 4 to6 so it does get better

Tj what clinical trial was your dad in

I think your dad is doing great

Best Wishes
Dave and Sue