Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Mask and weight loss

Totolemar
Posted by

Hi everyone, just started on week 3,to be honest not feeling to bad throat wise dry mouth and tastebuds totally shot,my problem lies with weight loss gone from 99kilo to now 92,just can't face the thought of eating, anyhow started with rig today ,supposed to have three drinks today and then the feed tonight,

First drink in and hour later diaherra, which I had with the chemo two weeks ago,my question is has anyone actually had to have a second mask made ?

No one's mentioned yet but obviously I need to get this problem sorted asap 

Martin
see you on the flipside
Beesuit
Posted by

Poor you. 

I had my fortisips  through an NG tube and I could taste them. Horrid. Stomach didn’t want anything. 

You radiographers will have a certain amount of adjustment in where your mask clips onto the table do don’t fret yet. They will check every time

Somebody here did have a second mask made bug I can only recall the one  

Margaret853
Posted by

Hi Martin

Sorry to hear about the weight loss.  I know what you mean about not being able to face eating.  I felt the same and I lost a lot of weight in the first week of treatment until I got adjusted to my PEG feeding.

It's not ideal to lose weight during radiotherapy, but don't worry too much.  As Beesuit says, there is some adjustment possible at the point where the mask joins the table.  I seem to remember they used to put extra bits under the neck support.  I do know a couple of people who had to have new masks, but they can usually sort things out without that step.  

It can take a while for the body to adjust when you start tube feeding.  I had nausea and stomach upsets to start.  We tried several things and I don't know which one(s) made the difference.  Firstly I was told to slow the rate of feed right down and only have half a bottle at a time.  This would take about half an hour.  I adjusted my position as I felt sick if I was sitting up too much, or leaning back too far.  We diluted the shakes and this seem to make them settle on my stomach better.  Also I would sit down and rest for several minutes after feeding as I found walking around straight afterwards made me feel sick.  

The good news is that once the initial problems were over I managed to put back all my initial weight loss and I maintained my weight pretty well afterwards.  Hope it's the same for you.  xx

"Life might not be the party we were expecting but while we are here we should dance."

Totolemar
Posted by

Hi Margaret and beesuit,

Just got home from hospital couple of hours ago and tried another drink, this time took it a bit more steady, probably an hour in total but then rested up like you said and no pains as such yet so hopefully that was the problem 

Bit happier regards mask fit being able to alter,if need be

Cheers for help,just found as well that only need one more chemo  and not three as thought before as the doctor thinks it is the HPV virus so small wins just keep ticking days off my appointment sheet and thankful  although waking up with dry mouth and slight sore throat can't complain, usually after cleaning ritual etc I,m ok 

Do my mouth exercises in car on way to Leeds and back again so getting there !

Martin
see you on the flipside
Beesuit
Posted by

Remember these drinks are pretty calorific and you’re not doing too much so although you need protein to heal your energy requirements are not so important. I was told to get 6 ensures or 1.5 litres overnight by pump but I never got anywhere near that and maintained my weight. I lost some once everything had finished but they don’t keep such a weather eye on you then

perversely now I don’t mind the taste of them and have one now and again when I can’t be bothered with a meal. 

ricoshay
Posted by

Hi Martin

Sorry to hear your finding eating tough. OH is the same, altho resisting RIG feed so far, he has Calshakes a couple of times a day atm. Lost 3 kg in a week but seems a bit more stable now. Another guy we have met is really finding it tough and as he refused a rig he is losing a lot of weight. Thus far he's just been packed out to make the mask fit, hopefully they can pad you too to keep you in place.

Good luck Martin and try to stay strong, you're doing great...ricoshay x

....ricoshay
chris2012
Posted by

Hi Martin , well done so far with the treatment , in a way its good that you are now using the feeding tube as you should be able to maintain your weight a bit better . These drinks can upset your stomach to begin with especially when first using the feeding tube as your body is not used to being fed this way but it will settle down , I have to have 8 Ensures a day which I syringe through my feeding tube , must admit I never got on with the pump feed in hospital . 

       I only had one mask during my treatment although it had to be adjusted a couple of times as it became a bit tight around the eyes and nose , I have not heard of any having a new one made that I can remember,  it should not be a problem making a new one as you have to feel comfortable when the mask is secured down . All the best for the rest of your treatment ,take care .

                                                                                  Chris .

Its sometimes not easy but its worth it !                Click here to find out more

RadioactiveRaz
Posted by

Hi Martin

hang in there m revthe drinks try diluting them  50/50 with water see if that helps  plus  dont rush  them as they are very rich 400 calories so once they hit your back tummy it’s ruch. 

Re mask like others have said the clasps that fasten yiu diwn can be adjusted m as I am onky 5 ft tall and not big mine was always being adjusted and I as time went in had scans pretty much twice a week in the radiotherapy unit before treatment just to make sure they were aiming the beams  right. 

Re rig although I didn’t have  one I had th n g tube and I took a few goes before I got the flow rate right  plus I found walking around easier than just sitting when feed was going in. 

Week 4 I was struggling with eating anything orally and medication went in via the tube. Don’t forget no points in being brave if yiu have pain tell them. 

I too only  had 2 chemotherapy sessions plus also h p v 16+ Great re exercises I too did them on the good old m621 scared plenty of drivers I think  

good luck keep in touch 

Hazel 

RadioactiveRaz