My dad is wrapping up his 3rd week of radiation this week-he is refusing food and continues to hydrate with 2000-4000 mL of water a day and 2000-2500 calories via Ensdure/various protein shakes.
As you know, his mouth looks like....uh....hamburger? He is a "healthy" 260 lbs.
Do you think he can sustain with only this liquid diet without the peg? (realizing that you only get liquids via the peg anyway.)
Should I encourage more calories? He can still swallow-
Oh, he did get his Oxycontin today-yipppeee!
Hi Shawna,
We talked a couple of days ago. He will have no problem if he can maintain the calories oraly. He will lose weight, but not so much that it will threaten him. Make sure he has enough protien in whatever he is drinking. He will gradually weaken during the treatment program. At the end, he will sleep more and be quite lethargic. I was and he and I began at about the same size. If he can still swallow, hurray for him and more power to him. His voice may bercome very weak. I could not talk the last three weeks of my treatment.
You haver my numbers.
steve
Oh, Steve-I can't thank you enough. I got the Equate, I've been with him every night. It's working out. I tell him this is a "cheater way" to lose weight ; )
Will it get worse, I mean-do/will the sores go down his esophagus and airway?
I fear his airway will occlude from all of the tissue damage? Does that happen? I need to know so I can be aware-blunt truth works best for me.
Shawna,
He may be able to manage if he can keep swallowing the shakes at the rate he's taking in now. I hated Ensure, so my diet for the latter part of radiation consisted of Carnation Instant Breakfast mixed in the blender with ice cream, fruit, and anything else that would be nutritious and add calories. I also ate lots of different flavors of baby food, applesauce, and various creamy/mashed things that wouldn't require chewing. Swallowing did get more difficult over time, and I eventually had to do the "swish and spit" routine before eating to numb my mouth enough to tolerate meals. While it got to be a real chore, I'm glad I kept at it -- I never had trismus problems at any point.
You're right to try to watch out for mouth sores. It's critical to catch anything like that early on so it can be treated -- I had some thrush problems along the way that added to the overall misery level.
Cathy
I am living proof that you can live off of nothing but cans of Ensure poured into a PEG bag for a year. I sometimes had a smoothie my wife would make with ice cream, protein powder, fruit juices etc. to suppliment this, but no solid food for over a year. I should see if the Ensure folks need a poster boy......
His whole mouth is covered with sores-I CANNOT believe how the cumulative effects of rad just crept over one night. Oxycontin is not helping him-he let the pain get too bad (stubborn bull) so we're playing catch up. I'll be with him non-stop now. Any more tricks to suggest? I think I will pick up a little spray bottle to pour his viscous Lido into it. Then-cover his bod with Fentanyl patches or something. Man, you guys are all miracles.
Hi Shawna,
Steve here again. Get him some morphine. he needs it. I took oxycontin and morphine durin gmy whole treatment. oxycontin alone won't touch the pain. the morphine helps alot.
Get some magic mouth wash. It will help ease the sores in his mouth. He may need the peg tube to continue. Hoefully, it is not too late to put it in without surgery. I understand the stigma of the tube better than any, but I was very greatful I had it and I even played golf with it in.
Call me if you like.
Steve
Hello all, I'm real curious about something. As some may know, Mom has a peg tube and can take very little by mouth. I read about the different foods took by mouth such as ice cream, juices, fruits,etc. that sound soothing.
My question is, has anyone else had a problem with not tolerating anything cold because of the pain? Or fruits because the acids? She hasn't been able to for a while now and just started her first chemo on Wed. I quess what I really may be asking is it because her cancer is so advanced?
Just wondering if anyone has been there done that!
Thank you.
Dee
Also, is there anyone with the knowledge of what EXACTLY in plain terms the info below really means. I'm ashamed that during all this confusion, I must have missed the facts on this info!
____________________________________
Caregiver to Mom with unresectable SSCHN- T1-3,T4,NO,N1,N2-3 Diagonsed 7/05
Dee,
My cancer was evidently less advanced than your mother's (and I didn't have a tube), but by the time I was around halfway through radiation, I don't think there was anything that I found "soothing". In the latter stages of treatment, I couldn't even tolerate water unless I used a topical anesthetic on my mouth first.
That being said, there were certain things like smoothies, instant breakfast, ice cream, applesauce, baby foods, etc., that tended to slide down fairly easily (after numbing my mouth) -- although I did have some of the problems with cold that you mentioned, so something closer to room temperature was better. I did find that anything even mildly acidic was totally out of the question -- it really adds fuel to the fire when your mouth is beaten up from radiation.
Cathy
I echo Cathy's statements. The only things I could drink cold were Ensure Plus and bottled water(also no peg). I even had to be careful what brand of water I bought. Some burned and other s were fine. Absolutely nothing acidic I think for almost a year. Luke war seemed to work the best
for most other stuff.
As were go through our treatments, we keep losing more of our ability to taste. By the end of second week, I had lost everyting except salt, so even foods with no salt tasted salty. After that goes, everything tastes like cardboard for a while, then the taste gradually returns staring a couple weeks after treatment ends. My tongue was very sore, but I never developed the open sores in the moutht hat many other people had. I was on Salagen, did get a nasty case of thrush, and had only XRT no chemo.
So yes, she can live on an only liquid diet. She needs to carefully keep track of the amount of calories and protein she is taking in daily. I weighed 122lbs and they wanted me to take in about 1800 calories a day. This is about 65g of protein if Doing Ensure Plus or 5 cans a day. They really would have preferred I drink 6, but 4 or 5 was my limit. I only lost 4 lbs.
Hope that helps.
Eileen
I'm living proof that one can survive on Carnation Instant Breakfast & Hagen Daz milkshakes for 6 months. Couldn't stand Ensure or Boost - gagged me every time I tried it.
Funny, I haven't had a milkshake since...
Now I'm jonesing on salads.
There is a world of difference in taste between Ensure and Ensure Plus. I can't stand Ensure but still drink 1/2 can Ensure Plus for breakfast. Just stay away from the strawberry. It's awful. The coffee, vanilla, and butter pecan (sweet) were what I liked. Carnation Instant Breakfast is also good.
Take care,
Eileen