hi all
I am here asking for some advice i have tongue cancer (Squamous cell carcinoma) i got it last yr in late oct. have been battle it since i have had 3 surgeries lucky me after the first i got it again in a different part of the tongue so they cut it up some more i had intense radiation that ended on May 2 2008. I feel as i am doing good but i still get real tired is that normal?? as i call it i am still cooking from the radiation i have asked my docs they say yes i am a slow healer and that i could get sores in my mouth from time to time due to the dry mouth ? so those of you out there do you have any advice to how to help cope with the dry mouth ?? i have lost a ton of weight which is a good thing but the docs are getting mad at me now about it. They have put me on Salagen?? do any or have any of you had any luck with it?
I am still going through alot of pet scans and MRI's i can not wait for it all to end i thought maybe it would slow down but i feel as though it has not i am always going to one doc or another how long does this go on for? i was getting hydration treatments for a long time but i am doing good on that now. i know i will always be battling this.but i just want to know when does it get back to normal some what I have friends who have been through breast and colon cancers but non with oral and i feel that they do not understand how hard it is i mean don't get me wrong allll!!!!! cancers are hard and bad but oral wow i don't even know how to put it you all know you are always fighting it eating drinking talking oops sorry got off on a feel sorry point sorry all i try not to do that i try to stay positive on all things especially now it has given me a whole knew out look on life live for the day the moment and let the ones you care for know everyday!!!! well if any of you can give me some advice i would greatly appreciate it and thank you!!
take care
marnie
remember to keep the faith for faith will take you through it all!!!

i agree - all cancers are rough but oral cancer does seem tohave some of its own special set of circumstances it is hard for others to understand sometimes. A friend of ours whoo is a breast cancer survivor kept wanting my dad to go out to dinner with him to "EAT AND CELEBRATE" and while her heart was in the right place she really did not understand the pain my father was living. It has gotten better for him but without the Biotene gel and a very close by bottle/glass of water I dont what my dad would do. I know at one point he was going to try Salogen but he has not mentioned since. Sometimes we just like to visit and not have to talk about the big elephant in the room but I will ask his thoughts - keep posting here - this sis a great place with great people

Hi
theres a well used phrase about Oral Cancer
"the gift that keeps on giving".The end of treatment in most diseases sees the start of recovery,but not with this one.As you pointed out,the rads keep on cooking for a while after they have finished,and then allow one week of recovery for every week of treatment and you are looking at a long turn around.Even then you wont feel "back to normal" its doubtful you will ever feel "back to normal" but you may start to establish a "new normal".

Fatigue,dry mouth,excess mucous,neuralgia,eating dificulties,loss of taste,jaw stiffness -the gifts go on and on,but be assured these are the new normal for a while.As time goes on,and for some that can be years rather than months,these things should improve,but it will be frustrating and can be very slow.Very few people are lucky and sail through with no after effects in oral cancer,but they are generally the exception not the rule.

As in all diseases the body needs time to repair itself,and good hydration and nutrition are the secrets of success,so until you have those licked ,its baby steps marnie.Sleep as much as you need,eat as much as you can,and drink plenty,time will work its magic eventually,but you can't measure your recovery by other cancers.Oral Cancer is a beast of mammoth proprtions and pretty unique in its generosity for giving.

take care and good luck.

liz

Hi! Marnie,
I have been in the same predicament but to answer your questions it is important to find out what your situation is. Do you have a PEG fitted? as I was given a PEG prior to starting R/T, this made it easier to watch my diet and to basicly control my weight. I too lost heaps of weight (even though I was way over weight at the time) the supplimentary foods helped.
Hi! HelpingDad
This would also go for your Dad as well, does your Dad have tube for the food to go down? as it was a lot easier to get through the early stages. The eating of anything is VERY important, I tried everything I could, and it wasn't easy but by 3 and a half months I was starting in on soft easy to swollw food, yes it took some time but finally I started eating. There are lots of things that I can't still eat but I am getting better day by day.
For Dad and Marnie I wish you the best in you future and if you read my previous Post it should help you through this bitch and bastard disease.
Hang in there and "Stay Strong"
Trev

Hi Marnie

I'm sorry you're having such a rough time of it. I, too , lost a lot of weight before my hemiglossectomy. That all pretty much ended when the docs said I could go back to solids. I was lucky enough not to need radiation or chemo, but it was still traumatic. After my NG tube was removed (such fun) I spent a few weeks on baby food and Boost.

Don't worry about not being positive all the time--this cancer just plain sucks.

You're right that all cancer is hard, but, since joining the family of head neck oral and maxillofacial cancer survivors, I've realized that these cancers are particularly devastating because they effect on what makes us human: our voices and our faces.

Hard to believe, bit on 4 Feb Flappy the tongue flap and I will mark our 4th anniversary! Woohoo!

Julia

Hey T&D - my dad never ahd peg as Kaiser didn't see much need - they ddin't "want" to do it - so MANY things I learned from this board I NEVER would ahve known had I not reached out. They really made it sound like right after treatments he would be back to normaly and are very indifferent to the struggles he faces but my dad has gained back 6 pounds in two months and we are thrilled - he still has pain and get tired quick but smiles big

Hi all
I want to say thank you for all you advice and being there for me
Trev - no i was not given a peg they were hoping that i would get through it with out one and i have so far. and lets pray i will continue to.
eating meat is the biggest problem lets just say i am a vegetarian now not of choice i love my meat
i also forgot to ask i still get nauseated alot they gave me some meds that work on it. but they are concerned about it so i am asking are any of you still like getting nauseated it has been 9 mo. since my last treatment.
again i want to say thanks for being here to ask questions and just talk!!
take care
marnie
remember to keep the faith for it will get you through it all!!!

Hi! Marnie,
Nauseousness was never a majour problem with me with my first lot of cancer however they used to give me a "Macsalon" tablet prior to going in for my Chemo. After my treatment stopped I still had a supply off Meds for this problem.
However sincce I got my Pancreatic and Liver Cancer I have been on "Macsalon" 3 times a day prior to meals and if I am feeling Nauseous, they have been a god send & I have found that they do not seem to have any side effects on me.
HelpingDad & Marnie, I remember the night that I started eating solids again, I was at my sisters 60th and still feeling miserable about my problem with eating and thought that I would try some pasta which with the aid of water I managed to get a small serve down the throat with much joy then my sister offered me a slice of strawberry cheese cake which apart from the "NO" taste that went down brilliantly, since then everytime my sister drops by for a chat she brings me a "Strawberry Cheese Cake" from Michelles, this is 13 months after I started eating "I am starting to tyre of "Strawberry Cheese Cake" .
Anyway I am sure that you will both be back onto solid food soonish.
Love Trev

quote:

Maxalon

Dr. Joshi!
OOPS

Just checking to see if you are alert.
Love Trev

LMAO

hi all
again i want you all to know i am thankful you are here