Hello all..... my name is Nancy and I have been looking for an on line support group as my husband begins his treatment for his newly diagnosed base of tongue cancer. I'm certainly not new to the internet support network as his Hep C diagnosis has led me to find many wonderful new friends in this internet world. Marty was diagnosed in October and just this past Wednesday had his entire bottom teeth extractions in preparation for radiation due to start on Dec 20. How overwhelming this all is, especially during the Christmas season. I specifically seek help with nutrition concerns, as Marty is starting tx already thin at about 160 lbs (5'11")..... and worry so about the upcoming side effects of dysphagia and worse..... so any advice, help, support you all can offer would be very appreciated! I look forward to "meeting" you all!
Nancy

Hello Nancy and welcome.
You have found THE best place to come for advice and support. I don't know what we would have done without everyone's input on this site during and since Trevor's treatment.
I'll leave the impartation of knowledge to the experts who have been through it but as the wife of someone with head and neck cancer I can say this is a very reassuring place to come to.
All the best from Down Under
Deborah

thank you Deborah for the warm welcome... the more I read here, the more I feel I have found the forum I am looking for.........although oceans away from most....... we are all in "the same boat"........

Hi Nancy and welcome

you are right to be worried about nutrition,has he been offered a peg tube?The one thing that will help him get through this treatment is good hydration and lots of calories.He may be able to eat but not feel like it,so high calorie complete nutrition drinks can be used to supplement his ordinary diet to start with and eventually can sustain him if he is unable to eat for a while.This will help aid the tissue healing processand his energy levels.if he has a peg tube fitted he can use it for water,nutrition and medicaton and minimise the trauma of trying to swallow if the radiation makes that too painful

Good luck with everything

liz

Thank you, Liz for your nice note! Yes indeed, the PEG feeding tube was discussed but ~~ initially ~~ not accepted well by hubby. When he was advised by physicians that the radiation will kill his salivary glands, I fear swallowing will be a major issue, but am hopeful he can continue orally consuming adequate nutrition. Thanks for your welcome!
Nancy

Hi! Kickersmom,
I don't like to bring gloom onto you and your better half BUT reality must be told. I had major surgery to my neck to remove some nasty little critters (C) and had to have Chemo and Radiotherapy to kill of the hidden Cancers as they didn't find the Primary ones, I am afraid the RT was not pleasant and I did lose my Saliva (and that is permanent) I was lucky with the Chemo as I didn't have any problems with it.
I have finished my RT and Chemo (3 months ago) and have only just started to be able to eat normally even if the taste isn't quite right yet. Sorry to be so blunt but if my carers had explained the delay I would not have stressed so much as I was told "Give it a couple of weeks and you'll be back to normal NOT". Anyway hang in there and think I am here to tell the tail and I will be eating again.

Take care and "Be Strong"
TREV

Thank you Trev ... For responding.. And please do not apologize for bluntness... The more info we gain, the more prepared. We know this will not be a pleasant event, but will do all we can to tolerate!
Hang in there, yourself!
Nancy

Hello there Nancy,

I guess I am really late in saying hello to you. I have been upto other things and apologise for this delay. I have been through the entire gambit of loosing weight, putting on weight and I am also 5.11 in hieght. I dont know if Marty is on peg feed and if he does need to put on weight that would be the best alternative as my sweethear liz pointed out .

I have been on the peg for a long seven years and it seems to have gone of pretty well. As far as nutition is concerned, I imagine everyone has their own choice. Ensure is one such( I used to hate it and not that I like it now and never have it)- almost all my dear friends here will agree on the Ensure bit. My nutrtion has been a little different and its all thanks to my wife and Mum that I have been putting on weight and mantaining myself. My weight too had dropped so drasctically that I could not manage to walk three steps on my own (two I managed!), I had to be given a bath and in between was dehayderated that my entire body skin was peeling as that of a snake shedding its skin.Its again as I say its all thanks to my mums and wifes innovative food that I managed not just to bounce back but also have got back to my earlier self of looking fit. I am not the doctor - but I would suggest you have a chat with him and ask him if you could boil all the vegies and then puree them through the mixer either with milk or with chicken stock. Its one of the things I am fed with. They have created recipies which contain all the nourishment my body requires for a energy full life.

Do talk to the doctor first and then I am sure you will get a lot of replies on Martys nutrituion schedule. Do try and give him a lot of juices (fresh and not the canned stuff), contrary to what people may say (its not for all as it does not agree with everyone), a lot of milk in various ways - with energy boosters, as milk shakes with a lot of fruits, as watered down yougart and I also at times add (dont get shocked) one or two raw eggs( the whites ) down first and then mix the yolk with milk before pouring it in.

I think I am doing a pretty good job of keeping myself fit and its all basically upto the tastes of each individual as to what his body will accept or not.

Trev is an animal and has started eating again after being on the peg for so long. He refused to give up and now is enjoying all the fruits (and steaks) of his toiling hard to get back to enjoying all the good things in life. He and Debbie (his wife) are great people and you would always get the right kind of information from them. This is not to say the others will not give the information and any bit will go a long way in getting Marty back on his feet and as fast as possible. I have no idea of as to old Marty is - and as I said what may be right for Ananth may be bad for Marty - so do keep that in mind.

Am rushing off now but not before giving all my love, xxx and hugs to the women in my life here and warm hugs and love to Marty and all my dear extended family members who tolerate my idiocrysies( have I spelt that right?).

Take care Nancy and keep posting on Marty developments. You can expect a lot of help from this end - and thats a promise.
Ananth.

What an incredible story Ananth! Just finished reading your posted course of events that have brought you to this point. I will of course share with Marty as well. Marty is 56 yrs-old and also unfortunately carries a diagnosis of chronic Hep C, a nonresponder to 3 tries on treatment. He remains amazingly upbeat at this point with radiation begin date fast approaching. (On second thought.. Maybe I don't want him to see that you continued smoking as he continues to struggle with that matter) His cancer is a T2 lesion, stage III disease as it has invaded neck nodes as well. Your exceedingly active life style and committment to your working out are very commendable. It's just that I cannot see Marty accomplishing such as his hep currently limits his strength and endurance, or could that be the tobacco? Hmm... It's certainly an issue I will address with his Veteran Administration docs (thank God for the VA)as it truly makes sense to foremost take care of our bodies. thank you also for the nutrition hints.. I particularly like the pureed veggie idea. I will definitely keep in touch as treatment begins with updates and, well probably just to vent..... (((()))) to you and your family!
Nancy

Hi Nancy,
Was great to read your post. My life has been long roller coaster ride and its still taking time for it to come to a stop. Please do share it with Marty and leave the smoking bit out as I do not think temptations are going to do him any good. My doctors would scream at me everyday as they either smelt the cigarette or my wife told them - but then an adamant patient will remain one. Its been seven years now since I stopped smelling like an ashtray and feel pretty good about it - but to be very honest as one lady asked me during an interview, if I returned to being 100% normal- would I smoke again and I think I made a lot of people unhappy when I said yes. Guess they were looking for a hypocrite.

Marty still has age on his side all said and done and am sure with what you describe his mental state to be he should be able to do a good job in his war.

My life has been very different and I have lived every moment of it and today I have no regrets about anything - including my cancer or its reoccurance. There is nothing more that can throw at me or hurt me and so I do not see things in the light others may do. The doctors who treated me are angels who truly did their level best and seven years is a long time to show how good they are. I also know where things went wrong and why as they came forth and told me. I could have sued them but that would mean ruining a good doctors carrer, which I was never interested in.

I do not think 42 was a great age to get landed with cancer but what the heck - I at least had done all that life had to offer in those 42 years - making these last seven a bonus. A bonus to ensure the future of all my family members - which in it self is an epic.

Once again - I am not aware of how much strain Marty's body can take but any bit of workouts he can do will go a long way. Even a short walk every day to build up his muscles. I also do not have an idea of if he had finally decided on his peg tube or not as if he has - it would do him a world of good as he would be able to get a lot of nutrition and gain weight instead of loosing the same.

Try a pureed Pizza - its great too and one can actually taste the pizza via reflux!Its just that I have become so used to this alternate lifestyle that I do not feel the need for going infor another major surgery to reconstruct my food and air passage - which again may or may not be a success. Even the skin they will require for grafting will make me more hospital or bed ridden then what I need at the moment.

As I said earlier keep posting Martys progress and- ensure he gets a lot of nutrition - as thats more then half the battle won. The other bit is self belief and that I cannot really comment upon as it differs from person to person.

Say Hi to Marty - and give him my love and hugs - you get the whole package - love,hugs and kisses,
Ananth

Nancy,
My mum had surgery to remove half her tongue and coped very well afterwards. she had a naso-gastric tube fitted and removed and was eating quite well. As soon as she started RT the eating became a big problem, with severe burns etc in her mouth. She had to be re-admitted to hospital as an emergency case and re-hydrated itranveinously and her NG tube put back in.
That was3 months ago and she still needs NG feeding to top up what she can eat.

Hi Nancy,
I've been away from the site for a few weeks and am just catching up but as you'll find out, I eventually manage to get my oar in one way or another!!!
I had my op(and others since) just over a year ago. Although I did not want it, I had a peg fitted. It turned out to be the saving grace as I could not eat for a long time on and off. I still have it even though until last week I had been eating too.
Marty what with the C treatment and the Hep will need all the nutrition he can take. I would seriously encourage him to get a peg fitted. If he doesn't have to use it much, well and good but it's better to have the option. A peg is far more comfortable than a nasal tube too.
SusieR x x