One patient with glioblastoma still alive nine years later
by Bluegrass_State on Tue Jun 10, 2008 12:00 AM
by monkeyb on Tue Jun 10, 2008 12:00 AM
by oceanglory on Tue Jun 10, 2008 12:00 AM
Thanks for replying. My husband had the peg before starting his treatments but we did not need to use it except for about 1 week prior to the end of his radiation treatments. We wanted his esophageous to rest in case it was getting a little sore. We did the Ensure etc. and he did pretty good, Of course, it was removed during his surgery and another tube was put in. I guess this one is in the intestine (I am not sure) and as far as I know, it requires the pump and Petaman (?) liquid. We did that for 4 to 5 weeks but he finally just refused to set long enough for it to be pumped. I just pray he feels better tomorrow. Thanks for the support. I feel much better already. Bless you.
by tongrenhealer on Tue Jun 10, 2008 12:00 AM
We are over two years post op. Surgery was in March and his J tube was in and being used much longer than the month originally mentioned by the surgeon, although he had no complications and very few experiences of dumping, etc. We ran the pump at night for additional calories to supplement his food during the day and he was able to gain back some of the weight lost during chemo and radiation before surgery. He hated it, but it worked and running it at night didn't let sitting with the pump become an issue (but it was an issue for me when the alarms went off in the night when he'd lean on the tubing). It will get better in time, so keep nagging. Some of the discomfort could be electrolyte imbalance so the gatorade suggestion (or something similar) might be a good thing to try. It's a huge surgery and takes time and patience to heal. His body just doesn't know what to do about all the trauma it's been through.
What about you? How are you holding up? One of the surgeon's nurses asked me that about as far out from surgery as you are now. Then she proceeded to tell me the Ivor-Lewis was an 11 on a scale of 1-10. Do you think they could warn spouses ahead of time? Or are they afraid we would all quit and throw in the towel? Keep up the good work...it's tough being the caregiver.
by Bluegrass_State on Wed Jun 11, 2008 12:00 AM
Until you mentioned it I could not remember wthat the J-tube was called. Thanks. You are so right, This surgery is HUGE and time and patience will be very necessary. I think my husband was afraid he would somehow pull the tube out at night but if we do not get the tube removed today I will just have to insist we run it. He has had terrible problems with the dumping isssue. We have an appointment today at 1:30 and another post mentioned some meds that helped him for nausea and cramps. I am going to ask about those for him. If he can get some help with that I think he could do a lot better about eating.
As for me, I have never been on so many highs and lows in my life. You are right, we need to be warned....Hope you and your family a doing o.k.Thank so much.
by Cyclist on Wed Jun 11, 2008 12:00 AM
On 6/10/2008 Bluegrass State wrote:Hello everyone, Please help. My husband was diagnosed with esophageal cancer two weeks before Christmas 2007. After 25 radiation treatments and chemo, he had surgery which was successful according to his doctors. That was on March 31st of this year. He has really lost a lot of weight even with tube feedings. My question is, he does not have any appetite and everything seems to make him nauseous. I am really worried and afraid he is getting discouraged and I am very worried also. We go back to see one of the doctors tomorrow and he will probably will remove his feeding tube because the tube feedings were going right through him and made his stomach cramp. He had been trying to eat a little but yesterday and today, he just will not eat anything. Says the smell just makes him so sick. It has been a little over 2 months since his surgery, will this get any better soon. Thank you in advance. My heart is aching for him and I am so scared.
I don't know that I can help, but I can tell you there is light at the end of the tunnel. I had the Ivor-Lewis esophagectomy July 2005, at the age of 54. No chemo or radiation at any time. I had fewer complications than some, but it was a struggle for a while.
This might sound counter-intuitive, but I was able to eat spicy foods better than bland ones for a couple of months after surgery. At this point I can eat everything I did before surgery, just smaller amounts. I would try some spicy foods and see how it goes.
Another thing I did, and still do, is eat popcorn with good olive oil on it instead of butter. It's filling, whole grain, and good fat. Try it yourself and see what you think.
In any case - Good Luck and KEEP MOVING,
by Gerri on Wed Jun 11, 2008 12:00 AM
I am four year posts surgery, chemo and radiation. I still do not get hungry, but I remember right after surgery the smell of meat made me so sick. I had a J Tube but refused to use it because I wanted to eat normally. I forced myself, and I do mean forced myself to eat at least two bites of something every waking hour. I am gradually back to eating three small meals per day and several small snacks. I have gained thirteen of the thirty seven pounds that I lost. I like another poster, wanted tangy, spicy foods. Never late at night because of acid reflux. I particularly wanted any thing that had a vinegar taste. There is no normal, everyone is different just try to load your patient up on calories. Ensure threw me into a dumping frenzy, even if I diluted it. This not an easy road to travel, but certainly well worth it. I can do anything I want, I just rest more frequently. I am a 68 year old female, but this past Sunday I cooked for 12 people, I work at public work three days a week, weed my flowers, do my housework and do charity work. So keep forging ahead, better days are coming. You and all you love are in my prayers.
Cyclist and Gerri, Gosh thank you both for sharing your ordeal. You have all given me a lot of good information and you have not idea how much I am encouraged. My husband loves popcorn and so funny, he has always wanted anything with tomatoes in it. I know he was advised to stay away from tomatoes or anything spicy but hey, maybe we are all on to something. He is 64 and we are Ky. farmers. Love working in our garden, flowers and he mows and bales lots of hay. Of course, right now our son is doing most of it but he is still trying to get stronger in order to GET BACK to work. I am 62 and still work 3 days a week too. Thanks again everybody. Love and prayers to all of you too.
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