Jon

Read the posts as well as the links provided to you and you will know as much if not more about the PEG than most doctors.
I am not going to add any more as almost everything that could be said both PRO and CON is in the PEG Wars posts. Suffice it to say that almost every poster felt the way they did it was the right way and advise others to emulate them. Big surprise huh?
charm

Im Back,
Well even though I did not eat properly or drink for 3 weeks, I had to been called into Hospital, after 4 weeks so they can feed me and saline, but going to try to find something I can eat some how, drip feeeding me around the clock I have lost 17 klg now Im out of hospital.....22 klg I had a very bad reaction to the Chemo, so after 4 shots, I have to wait for the other 2 coming this week, I think, I have now completed 35 Radiation and put up with all the flem, to go with it, but now I am out back home, can not seem to eat by myself again, I am meant to eat by mouth or teach my self to, again, but everything I try to eat tastes disgusting.

In the end I chose not to have a post fitted, but managing with a nose feed......

Can you tell me how long I took you after Radiation to get your taste Buds back, so you can enjoy your food again. also it would seem my hearing had detiriated slightly.

The good news is my 6cm lymph node has now reduced up to 95% now, I dont know how much the base of the tongue Tumor has reduced or if I will survive 5 years or more but if I dont eat I wont last long.

Any tips on eating or drinking these hideous powdered nutrition drinks, or something my taste Buds will love, it would be so helpful

that's it up to now with 2 more chemo, to go, I hope its all over soon .

Hi there- I know this is the hardest part. I am glad you have the feeding tube. Almost everyone loses thier apetite for some time due to the reaction to the radiation and the chemo therapy. I did too. Try and be patient and let the process happen. Soon you will be on the path to healing but you wil have some valleys to walk through first. The radiation and chemo kills cancer cell and even the good ones so it will take awhile for that process to happen. Everyone is a little different in how they react to the treatment and how they heal from the treatment too. I got my sense of taste and smell back slowly a month or so after treatment ended and I had to learn to eat again. I had 90% of my tongue removed. I only have a smal amount of the base of my tongue left. It was a big challenge but I eat almost everything I want to now. It took a lot of hard work and patience and I was very very lucky in how I recovered from the surgery.

Hang in there. I know this is incredibly difficult to go through. This is a very difficult cancer - the side effects of the treatments and the ramifications of these drastic surgeries are really something.

Stya positive and just le the medicine work for now and then when you start to heal slowly each day try and make a little progress. Its hard but you can do it.

KATE

Jon,

Remember each of us can react and recover differently but with that said I never really lost my taste of sweetness but at 4 months I remember a slight increase in both my saliva and my taste. I think they go hand and hand meaning as my saliva improved so did my taste. I also noticed improvements in months 5, 15 (big improvement) and 24.

One thing to keep in mind is that just about everyone's recovery is a slow process taking up to 24 months so don't expect to much and consume 3000 calories per day (my opinion) for at least the first year post Tx.

Congrats for what you have done as we all know what a tough road you have traveled!!!!

Jon,

Here is a thread started by ChristineB that might help.

List of Easy Foods

Glad you are almost done with treatment.

Teacher Jon, I�m glad to see you are posting again. I have always looked for your thread because of the additional burden of red tape you have had to go through. It�s also good to hear the lymph node tumor has shrunk in size. Chances are the tongue tumor has also. My doctor told me the lymph node tumors are the more difficult ones to get rid of in base of tongue cancers.

When I started eating it was a struggle to get things down. Not much tasted good. I think you will find that scrambled eggs or mashed potatoes and gravy along with some ground meat are the most recommended. I�m almost a year out (jan 27 �09) and thought my taste was close to normal but found out over the holidays that pumpkin pie does not taste as yummy as it did before. My new favorite holiday pie might now be apple.

You�ve been through a lot. Just hang in there and realize that in two or three months you will be feeling a whole lot better and on your way to recovery. Continue to keep us posted. I�m sure the posts will soon start to be about recovery. Your thread was dormant for about six weeks and I�m sure I�m not the only one that started to worry about you.

Jon , it is good to see you post again. Your problems with food in pretty common for most of us. It is 2 1/2 years since my neck dissection and loss of a good bit of my tongue on both sides plus all of the pieces taken for biopsies. I still can taste only the frist food that goes into my mouth and after it is all the same and all liguid or very soft. I lost my tatse for food but force feed myself. Just make yourself eat and gain some weight back. After a nice breakfast of poached eggs on b uttered very fresh bread, I stil only weigh 158 and can;t seem to gain any weight. I like you and a lot of us get discouraged but we must continue to fight this OC and do our best.Just keep right on pluging along and one day hopefu;;y, you will get the upper hand.. Good Luck Jon and be brave.

Jon,
After completing Tx, food tasted real bad to me for the first month, then began selectively and gradually improving.

After about two month the first few bites would taste Ok, then cardboard, and finally the bad taste.

After three month I was doing Ok. I kept my PEG for a couple months or so and used it to keep my weight up.

A couple thing that worked for me was fruit juices. Dark juices like grape, blackberry. They actually have a lot of calories (mainly sugar, but calories never-the-less). I was able to drink these all the way through Tx and until my taste improved.

Following Tx I found I could eat fried eggs and cheesecake. Just keep trying things and retry them again in a week or so. For a while you have to do your best and eat to live, not live to eat.

I am glad to hear you made it through.

Jon,

Good to see you post again. I did without the PEG also and hated food at this point in treatment. I just did eggs, pudding, and, hot dogs but mostly the Ensure. None of it had much taste. I started getting taste back at one month. I am two and a half months out and can taste most everything to some degree. It comes back slowly but I do have enough taste to start enjoying food again.

You are at about the hardest point now. It's all downhill from here. It will get a little easier as you go along. Just try and get something down every day. Before long you will notice you are tasting again.

Kelly

Hi All

Well I came out of Hospital having to stay as I was not eating or drinking owing to a serious loss of appetite.

I have now had my feeding tube taken out as I went against the idea of a Peg fitted I�m glad I did I had lost 25 kilos in weight and now I have gained 10 kilos the doctors say I need another 6 kilos to be at my perfect weight but don�t find it so easy eating by mouth as everything taste of cardboard and parrot droppings.

I find I can drink pomegranate and grape juice ok but milk seems to bring back the flem in my mouth I can eat spag bog the frozen packet type but mostly I can taste so much salt in it topped with a slice of ham and poached eggs and boiled veg potatoes carrots onions mixed with butter and Honey this is it so far any one else know of any good recipes.

I have to go for a MRI scan as my Lymph nodes seems to have shrunk down to 1 cm and they are hoping more by 13 march from 6 cm so they say the primary base of neck should be same so good for me but warned me if they don�t like what they see its the surgeons knife cut out lymph nodes and may be some base of tongue but he don�t think so with me God how frightening is that to think about.

So that it trying to eat and put on more weight. My strength has come back but last couple of days I feel weak but it�s the boring diet I think.


Thanks Guys

Teacher Jon