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Hi all.

I wanted to know, is the weight loss caused by the cancer; by the treatments (chemo - radiotherapy); by difficulty eating (OK that sounds obvious); or by a mixture?

I ask because, OK, I have lost some weight, but am really not upset about it because over the last 18 months I had put a load on; so I am still at least 5kg overweight, probably momre like 7kg. I am between phases - recovering from surgery, with radio therapy due to start on the 28th. Apart from I get tired more easily than normal, I don't feel there is anything wrong with me - I have a hard time recognising that there is a problem, other than getting over the surgery. Maybe that's good, but maybe it means I am not looking after myself as I should, on the eating front.

I have been given loads of supplements - high protein drinks etc - and advice to add cream/cream cheese to things, use full fat milk etc - and I do.

But I don't do the program properly, making sure I eat 3 proper meals a day plus 3 or 4 snacks, and I guess I am losing weight slowly - only slowly.

Do I need to make myself concentrate more on this, because the illness is working away at me, or do I wait until the chemo/radio has started to make myself really notch up on the food front? By 'normal' habits, I welcome weight loss - ah, to be back at a size 12 again! - but I am working on my brain to tell myself that it is not good for me right now.

For details:
I eat a certain amount 'normally', and if I think I havn't done well enough, I have a pack of nutrition via the tube. I frankly feel pretty stuffed most of the time. And I have never been one for eating breakfast - I am having a full fat milk hot choccie normally now, instead of tea, and I have a high protein drink during the morning some days. For lunch I will eat something like scrambled eggs with cream/smoked fish added, a bit of soft bread; or today I'm going to try a microwave pasta dish. Another HP drink during the afternoon, or maybe yoghurt + fruit compote + spoon protein powder. And either a pack or some food in the evening - although I don't think I normally eat enough in the evening to make up my correct intake (e.g. one steak haché/burger plus potato purée with additional protein powder or cream/cheese; maybe some vegetable purée; or a bowl of soup with cheese/cream, a bit of bread).
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I'm not sure (apart from eating less) why weight loss occurs, probably a mix as you suggest and throw in a load of anxiety too.

However only speaking from personal experience, if you feel you can eat a bit more and get a bit more weight on then do it before the radiotherapy/chemo starts because you will, more than likely, not feel like eating much at all, and possibly at some point towards the end of the treatment almost not be able to get a bit of weight on now!

You will be surprised at how quickly you can lose it! I was very similar to you in that I'd eat quite a bit after surgery and felt OK but i really wish i'd tried even harder before the chemo/radiotherapy started, to put a bit more weight on. For the first couple of weeks you will wonder what the fuss is about but then it hits you and eating will become harder. So try to eat more now!

Good luck with the treatments and keep in touch!!

Hi Moptop,

I lost 10 lbs after the surgery last year. Then gained Five back quickly from a pound of fudge. But once radiation started I slowly started loosing but by the time radiation was over I had lost 30 some pounds. And by the end of it all I think six months from starting radiation I lost a total of 54 lbs. I was told it is from your metabolism going in to hyper speed while the body is healing and will also do during radiation. I have stopped loosing weight since June been sitting nicely at the same weight but I may have gained a pound recently. I did not have a peg though. I am happy were I am I was about 50 over weight when diagnosed.

Good luck to you and keep the calories going in.

Hi Moptop

I have no idea how much weight I lost thanks to a tumor on my tongue and teeth that not even the tooth fairy would take. The loss continued while I had my ng tube in, and for a short while after (my baby food and Boost days). When solid foods came back into my life, all bets were off, and each pound I'd lost returned. Most of them came back with at least one friend.

Last edited by julia
Hi, Moptop,

I lost 4 kg. after surgery, but I have regained 2 of them at December parties and work lunches. However, yesterday I had minor surgery performed to remove an excrescense in my tongue's scar from my surgery on September 3rd. Since I'm back to liquids and purees for some days, but without radiation or chemo, I'll let you know if weight loss is due only to the "tongue cancer diet"'
The newly removed part is going to be biopsied. Let's wish that there will be nothing new to be found!
Best to you all,

Hi Moptop

I lost a significant amount of weight (approximately 28lbs) over a few months which I really couldn't afford to do as I am quite small in build anyway. This was mainly due to a tongue biopsy, then having the operation to remove a tongue tumour. The oncologist's advice was to eat as well as I could before commencing the radiotherapy and after two weeks into it I could understand what she meant! It's been eight months since radiotherapy and I've nearly put back on all the weight that I've lost. So there is light at the end of the tunnel.

All the best with your treatment.
Hi thanks to everyone for their replies - and happy and healthy new year, while I'm at it.

So, I understand from general opinion that weight loss is probable during and after the radiotherapy, not necessarily all due to eating issues, probably also a side-effect of the work the body is doing and the strain it is under.

I'm into the radiotherapy now, session 8 done today. I have started to experience the saliva loss and reduction in ability to eat, just since Monday. I've definitely not been eating enough this week, and I'm trying to get my brain back into the right space to make myself have the right foods available, instead of trying to eat normally and failing. I was so pleased with myself for having got pretty close back to normal around Christmas, after the surgery, I do recognise I havn't wanted to go back down the not-eating road. I'm consuming a couple of nutrition packs a day via tube, but with the small amount I am eating in addition, that is not sufficient.

Other mental note, get some 1 litre packs in so can feed them overnight (really low speed). I am lucky that I have a weekly consultation with a specialist nutritionist, as well as with the radiotherapist doctor; she has lots of tips for eating well, and suggested this as a way of getting more in me without cutting my normal appetite during the day - because I have never been one to eat in the morning (although I now daily have a BIG hot chocolate made with full fat milk).

Also got some really good advice from my dentist today, which is to THINK about salivating, or about something you really really enjoy eating, which stimulates it; and it works!

Going on special 'feed me' shopping trip right after this, to get courgettes (the miracle 'with this you can swallow anything' veg), diced chicken and diced ham cubes, can do stir fries or omelettes etc with them - instant mash - and I need lots and lots and lots of caramel flavoured Danettes. They never let me down Smiler

and start using my protein powder again, I'd forgotten ALL about that!
keep up he good work moptop you sound like you are coping really well.

it's hard trying to eat when you dont really feel like it but do try and force yourself. i used to set myself targets with protein drinks etc, for example i used to line them up in the morning and try to finish them all before i went to bed. I started treating them like medicine rather than food because i really didnt want any.

any keep on trying you are doing really well.

all the best

Thought I'd update this following reading an article posted by the good Doctor.

I have been getting good nutritional follow up, and continue to do so, and we are managing my weight loss with enteral feeding. I have lost overall 7 or 8 kg - something over a stone - and after the treatment had all ended, I had a very bad 2 weeks, losing 4 or 5kg in 10 days, with muscle loss etc. I also got extremely tired and very depressed, with suicidal thoughts that I just didn't feel I could share with anyone. Fatigue and depression are very hard to explain, and my partner's emotional bucket was already full. I was hospitalised in emergency just before my last chemo treatment, to get me back up to weight, but afterwards I was not able to get that assistance although I tried. I was given support and guidance by the staff, though, and that did help to get me back on the right track - starting with ingurgitating 2 packs of high protein goo a night.

I have now put back on the muscle I lost, or at any rate enough so that I don't notice the difference (well I still get fatigued, but at first I couldn't walk more than about 10 mins, my legs shook when I stood etc; I can now get around normally, my energy runs out after about a half a day. I think my arms are probably still weak, so I guess other parts that aren't getting exercised are too. I will be starting at the gym again soon I hope). And my depression lifted as my nutrition and energy improved.

I am still concerned about my food intake - I know I'm not eating a normal quantity yet, and at the moment I do not seem to be making any improvements on what I can eat, although it is a lot better than it was; and I guess the quantity is still gradually improving. I've put myself on 1 pack of goo a night recently, but I have lost a kilo, so I'm going to have a few nights of 2 just to bolster myself up, before...

I go on holiday to Marrakesh for a week, yayyyyyy! I'm expecting to start work part time in May and I really do think I deserve a holiday first (now some people may think that is unreasonable given I've been off work for 6 months lol but I think you lot will understand!). I will be entirely without enteral feeding while I'm there (or... I might take a few packs and some syringes just to be able to keep myself going if need be). I'm really quite scared - the last thing I want to do is get weak again, just when I seem to be on the up and up; but I know I will be able to eat tajines - basically meat stew is about all I eat at the moment anyway, so it will be nice to have some different ones.

I am feeling positive and very grateful to my surgeons for having done such a splendid job on my tongue graft, and for the wonderful care and support I've had from all the other health care professionals who've been involved in my treatment to date.

Control scan on 3rd May. Wish me luck.

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