Hi, I'm new

welcome

Janelle,

Welcome to the H&N forum, so sorry about the side effects from treatments your Dad has to deal with.

Your Dad can live happily, healthy and for many more years living by the PEG.  I do not know exactly what the issues are, but I do know that cancer and its aftermath can play cruel mental and physical games with you.  Sometimes it is easier to not “rock the boat”.   What do his doctors say?  Does he have viable room for improvement? Does he need to see someone with more experience?

With love, remind him that he has many more years and the time is at hand to act (he is not too old).

Matt

58 in September

Tube feeder

I'm a tube feeder have been for 8 months. I didn't get on with it at first as most of my time I was just sitting waiting until I had my meal quota which took ages through a pump. I then went to a syringe and leaving the plunger out I just pour my Ensure2cal in the top hold it high and let my stomach take it at the rate it copes with then keep topping up until finished. I have 2 bottles morning with a bottle of water and an anti acid soluble tablet and 2bottles for lunchtime and bottle of water and 1 bottle in the evening plus the water which takes me just over 2000 calories a day which keeps me a healthy 10 stone which is ideal for my height and age. I've been told everything I need is in the Ensure drink and I can live perfectly normal on this diet for as long as it takes. I don't do blitzed normal food as I can't taste it it doesn't make any difference to me what I survive on. I've got to the stage now I don't like anything in my mouth except to clean my teeth and gargle with water, I have an endoscopy in the coming weeks but after having two  that didn't work I'm not unduly worried if I stay on the tube. The only thing I don't like is having a long piece of tube hanging out of my stomach and having to tape it to me.

Welcome

Hi Janelle:

 

And a big Welcome to this forum.  You'll find the folks here to be the most caring and encouraging around!  Sorry I don't know much about long term feeding tubes.  But sounds like you've already gotten some answers from those that do.  As far as the numbers game,  I'm kinda of like you.  I would want to know something; but my husband was the one with the cancer and he lived each day he to the fullest.  Maybe you could ask your folks in terms of prognosis instead of numbers.  But like some have already said you wouldn't want to get caught up in marking days off mentally.  But I do understand to some degree why some would rather not know.  It's kinda of a catch 22 situation I guess.  And the bottom line I guess is it's better than not eating at all.  My husband just had one temporarily when he was going thru radiation but never used it and it was removed after the radiation tx were thru.  He didn't have any swallowing issues.  But just wanted to welcome you to the fold!  I joined in 2009 and my husband passed away Aug. 2010 and I still come here often to post and see how everybody's doing.  You will find we all are caring and whatever is bothering you or your feeling is important to us no matter how trivial it may seem to you.  Just to explain how I sign my posts.  I sign Jan (Basketcase) and the basketcase comes from my husband telling me to calm down and not be such a basketcase.  I did what I had to do to get thru everything but inside I was a basketcase a lot of the time!  Anyway welcome and good luck to your Dad and remember whatever the numbers are people beat the odds all the time.  God Bless!

 

Jan (Basketcase)

The Peg Tube Living

I was diagnoised with stage 4 left Tonsil Cancer in Feb. of 09 at the age of 61.  I had no choice (at least I thought I didn't) in getting a Peg Tube.  With the aggressive spread of my tumor up in my caratoid artery, and encroaching my spine, "they" had informed my wife (Jane Nell..btw) that I'd probably not make it all the way through treatment which ended in June of 09.  Probabilities are amazing.  Anyway, I used my Peg Tube totally, and nothing orally, until the following March (2010).....when I got fed up with it and made up my mind that I didn't want this tube sticking out of my stomach for the rest of my days, and found a wonderful, hard-headed Speech Pathlogist who worked my tail off to re-learn how to eat and swallow.  Lost 70 pounds during treatment, and at 6' 4", I'm at 185 and eating most things, then trying and loving or discarding foods that "just don't work anymore".  I'm told I look a lot less younger than I did prior to treatment.  I'm running 3.1 miles every other day....unless it's miserable out.  Into weight lifting, and TRX excercises, Daughter has me doing Pilaties twice a week and Yoga at home for Neuropathy in feet and hands....twice a week.  And all I can say is that I feel great.  So lucky that I can travel with my wife, son-in-law, and daughter to places in the Pacific and this Fall to Europe (Ireland in Sept.).  Will Cancer come back to me ??  Maybe....maybe not.  But being retired, and having the resources, strength and ability to do whatever.....sure has made me not afraid of it ever again.

Larry

janelle28 said:

thank you

Wow, all I can say is thank you. Thanks to everyone for your responses. I came home from work today expecting maybe one person to have answerered and you all have brought tears to my eyes. I don't know why I waited two years to reach out. I  am the type of person that always needs to know why and how and when....I should tell you all a little  more about my dad, in his younger days he raced canoes, lifted weights, and was the healthiest person I knew. Non smoking, beer once in a while kind of guy.  About five years ago, he had a lump form on the side of his neck, and he refused to go to the doctor (for it or any other ailment). I continually told my mom to stop worrying and if it were cancer, it probably would have grew/spread/killed him by now (not really worrying much about it, since he WAS so healthy) But, in May of 2012 after being threatened with divorce from my mother, he finally went to the doctor, and within two weeks he was diagnosed with scc on the base of his tongue, and to this day, I am not sure what the lump in his neck is/was, my mom says it was all the same tumor, but I think she confused what the doctors told her.  So, he went through all the nasty treatment, and was at his worse in October 2012. In Feb 2013 the EENT told him his cancer was gone for now, but that he we need another PET scan in six months, which was about a year ago, and that was clear.  His EENT says if he see's him every three months then there is no need for scans/mri, etc.  He has pretty much returned to his normal life, aside from the fact that he cannot work because he spends his whole morning in the bathroom and has to feed himself every 4 hours throughout the day (2cal, i think). He goes fishing when he can, still does stuff around the house, he actually just repainted the kitchen. He is 5'9 and weighs about 139# and I worry about him loosing muscle/fat.  He drove over to my house last weekend (about 12miles) and he said his rear end was terribbly sore because there is no fat left on it, LOL. Is it true that if someone stays cancer free for five years, there chance of long term survival is much greater? Thank you all for the warm welcome. I am not sure if this post really makes any sense, but I will check back tonight.

 

Janelle

janelle28, i'm glad your dad

janelle28, i'm glad your dad was in good condition.  i'm sure that helped him thru tx.  i lost 120 lbs but have now gained 40 back and hoping i do't gain any more :0(   as for the 5 years, the docs say when we reach 5 years, we are cured.  one person on here just celebrated 5 years and his doc telling him he was CURED!  that is awsome.  so we all celebrate each year but we all really look forward to our 5 yr anniversary.  i'm glad you finally decided to post and i hope you will stick around.  we're glad to welcome you to our family.

God bless you,

dj

more info

Janelle,

I first noticed a lump on the left side of my neck, it turned out to be a swollen (cancer)lymph node which led to my tongue.

Sounds like he is doing pretty good, but might be  able to do better.

5 years clear is a very good sign.

Good luck, good health.

Matt

janelle28 said:

Hi Matt, thank you for your

Hi Matt, thank you for your response...I guess that makes sense. My mom kept telling me that it started on his tongue, and migrated to his neck, but how does someone not notice a lump on their tongue for 2-3 years? He eventually started getting sore throats and loosing weight, etc. I think he's actually getting back to himself...I dropped my daughters off there this morning before I went to work and he had to show me some work he did in the garage yesterday, followed by how much weight he can now bench press, and how many curls he can do, haha....I was late for work

 

Have any one of you guys had a successful stretching procedure done? My dad also has the option of some radical disection and attachment of intestine to his upper gi tract so he might possibly one day be able to swallow (sorry don't know the technical term for it) has anyone heard of or had this done? He tried getting stretched May of 2013 and they tore a hole in his esophagus, he was aspirating fluid at home and developed a nasty infection which almost took him out, he was down to 119# and had a drain tube in his neck for two months. I think since that ruined his whole summer last year, when he should have been feeling better, he's ok with lifelong PEG.

Thank you all for a warm welcome, it's nice to have a dozen instant new friends

 

Janelle

A Friend

i had a friend who had that radical surgery with his upper gi tract from throat cancer and he did great and ended up eating about anything, but he just couldn't eat a lot. I think it was the same thing you are talking about. Any who the last time I went through treatment I had a peg for like a year and I think I was doing the 2 cal and putting at least 2,000 calories down. The dietician was trying to keep me around 1200 calories which is fine if you are not 6'4" and used to weigh 250 pounds. I would like has already been brought up make sure that he is getting enough calories and if he is exercising a ton he will need more. The one thing I liked about the tube is I could jam a couple of cans down it in five minutes and be done eating and full belly : ) I truly hope they can do something for your dad cause it is a bummer not being able to eat. I've been there and it is no fun. I will keep him in my prayers and I hope he will be with you a long time. I'm a two time cancer survivor once when I was 25 and once when I hit 39. I'm 44 now and still kicking, so I know your dad can do it! God bless! 

John J

janelle28 said:

Hi Tim, it is people like you

Hi Tim, it is people like you that I am looking for. Most people that I talk to can still do liquids at least. Does it bother you? Because my dad says that he doesn't even get hungry or feel like eating...it's more of a chore than a privelege almost. I think he's finally going to let my mom blend regular food to try. I couldn't imagine eating milk like substance for two years straight.....On an unrelated note, has anyone ever told you that you kinda look like detective Mutch from the tv crime drama Law and Order SVU?

Janelle

Hi Janelle

My Wife and I travel sometimes other times I travel by myself. For someone on a PEG tube I can’t be confined to just be at home. I was giving 6 months to a years to live back in 2006 and made it 8 years passed that, I am still working full time as a Maintenance Manager and going out to the ships when they come dockside. I was 230lbs before C and now I am 142lbs. There is a lot that I can’t do anymore but I am not dead so I am going to fight and do all I can do, with a little help. My traveling friend is a NutriBullet, I take it with me wherever I go so I can blend anything anywhere. I have a convertor hooked up on my work truck for 110 volts for places that don’t have outlets. Let your Dad know he can be himself again. I pull out my PEG tube when my wife and I go out to eat, I am not embarrass of it a bit, people look through the side of their eyes and think I don’t see them, I find children are not afraid to come and ask what are doing. I let my grandchildren help me push the syringe in so that they can understand Papa is normal he just eats different. My one granddaughter is amazed that I can eat and talk at the same time. Only in the mind of a child and it is too bad we can’t believe like a child that everything has a possibility.  If you like you can contact me anytime or call my wife and she will tell you all about what I eat and how she makes it.   Just click on my name Hondo my e-mail is there.

 

All the best to your Dad

Tim Hondo