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#61835 09-23-2007 11:52 PM
Joined: Apr 2007
Posts: 37
Allan Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Apr 2007
Posts: 37
Hi everybody i thought i would give everyone a update 3 months out of treatment peg removed about 4 weeks ago i have been eating for about 2 months and its still painful ,oh how i long to eat some of the BC food (before cancer) a bacon sandwich , curry , chocolate, cakes , just the thought would make my mouth water if i had working saliva glands , i am now beginning to start to feel OK still no saliva my water bottle is my constant companion,( i think there could be a nice little earner here water bottle holders by prada just clip on your belt a ideal present for the cancer sufferer) i am not putting on any weight as such i lost 3.5 stones and as soon as i seem to put some on of it comes again i think its because i fell better i do some thing and just burn the calories up i have just had 2 weeks hols on my narrowboat something at one time i did not think i would ever do again and can ride my motorbike again not far but i can ride ,my only problems are dry mouth , i get tired very quickly , and my temper is shorter , the doctor says that my saliva may not come back and my other two problems are connected you see i always thought that having this wonderful disease would be quite straight forward there would be one of two outcomes I would have the treatment and would be cured and life gets back to normal , or i would have the treatment and it would not work and i would die , what i did not think but i am coming to terms with is that there was another option i would survive but things would not be quite back to normal at the moment this appears to be happening i am having a easy time compared to some of us my only problem is my own selfishness i want to recover quicker , my doctor has told me that i have done very well up to now but this may be as good as it gets and if there is any improvement on my saliva ,taste buds , or tiredness to treat it like a bonus and i think he is right hopefully this will calm my temper down , why can it not be like the films i hoped if i survived this it would make me a better person not one with a shorter temper and moaning all the time , so there you go that's me finished spouting of for a while , and as my end of school term report always said , Allan must try harder (and i promise i will ) .... i have posted this in this section as i do not wish to chance fate by posting in the survivor section as yet , . by for now Allan


age 52 heavy drinker and heavy smoker stage 111 squamous cell at base of tongue trying to give them all up ,8 lot of cetuximab and 35 lots of radiation , gave up smoking at the start of treatment. only drink now in moderation
#61836 09-24-2007 10:05 AM
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Allan,
I am a bit behind you, just 2 month post rad... and I have been concerned about some of the same stuff.
Here is what I collected (with thanks to Gary) (search for: Topic: Loss of taste, permanent??)

Taste can take up to a year to recover, same with glands. To be sure the sequence and timing will also depend on the amount of radiation that particular gland (there are a few) or bud received. The increased activity will burn up more calories, that together with food that does not taste right or taste at all is a problem. You can always use boost or carnation instant breakfast to augment.

You just need to give it time and be patient. (and just so that you know, I am not a patient person myself).

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#61837 09-25-2007 07:45 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
you did it for us too allan .

much love and remember what i said months ago.

Cherish that wife of yours!!!!


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.

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