Hi All,

It has been a while since I last posted.... When I did hubby was in CCU and I was ready to be commited!

Since then quite alot has happened.
Hubby was hooked up to life support for 6 days in total, after giving him steriods for 48 hours they removed his breathing tube without incident.
After being on a regular ward for another 4 days hubby was able to come home.
I sat down with one of his doctors and reviewing every scrap of paper in his records we found the following details which they think caused the problems that put him there.
When he was admitted to the ER with 103,3 temp he had his newly upped dose of Fentynal patch on him, it was not removed even though it should have been as it states you should not wear it if u have a high temp / overheating. ER Doc sent up orders for meds including more patches. I removed his patch while he was on the ward (next day I believe) and told "a" nurse I had done so, it was noted in the record - new shift of nurses patch replaced on his shoulder (no one knew about that!) Dr makes rounds notes no strong meds etc etc, another doc makes rounds (not any of his cancer center docs)prescribes morphine........the rest is history. When he was in CCU he had no patch on, no-one knows who removed it but a residue was left so u could see where it was.
The company that make the patches has written to us to ask if we would release his records to them. At the end of the day it was no fault of the patch just the way it was given.
Moral of the story.... if you have a high temp... TAKE OF THE PATCH!!!!

DH has just had his 6 week PET scan, results show the tumor has shrunk and that there was a tiny bit of uptake on the edge of it but could be residual from treatment. Either way his op to remove it is going ahead and we are waiting to see when the date will be.
As for pain meds.......... He has TY during the day and TY PM at night, he refuses point blank anything stronger....... somehow I can't blame him! Magic mouthwash we have but he has not used since before his hospital stay.

Now for the questions!
Hubby wants to know (he asked me to ask!) at the moment he is swollowing approx 20 mouthfuls of water a day (rest via peg) he is scared to try anything else...... He would like to know what was the first item besides water you tried to drink / eat post radiation and how did u get on.
How long was it before you could finish a bowl of clear soup.

He would also like to know any tips or tricks you might have used!

Many Thanks

Sammie & Rich

When I finished treatment it was 5 months till I entured any foods.Clear broth was first 1 can would take me an hour. then I progressed to loose scrambeled eggs. and continued on from there. A lot of coughing and choking at first. It took me about 10 months till I was eating enough to stay alive.

When using any type of transdermal patch you should be very careful to avoid being out in the heat as well. When your body gets heated up (in warm weather or with a fever), your pores open up which will allow the drug to be "dumped" into your system at levels in which is was not intended to be. It's a no brainer, I'm surprised that the medical professionals in this case did not catch it immediately.

Please use caution when using the patch and going outside during these unusually hot summer months.

Sammie and Rich, my first food was Campbells chicken noodle soup. It is so salty that I ate cases of it because I could taste the salt, sort of, and the noodles went down lickety-split. I cannot even look at a can of the stuff now, but back then, I felt pretty normal to be eating that. In fact, it was just last winter that I made a homemade pot of it, having finally overcome my averson to the idea. For a few weeks, though, Campbells stock must have gone up with the quantity I was consuming.

Hello. I just finished thirty-five sessions of radiation and three sessions of chemotherapy for cancer on the base of the tongue and in the lymph nodes of my neck. I'm worried, because I cannot find anything at all that does not burn when I eat or drink it. I used to be able to drink instant breakfast, but it burns. I can eat cream of wheat, but that is certainly not enough. Could you please give me some suggestions for foods to try and approaches to eating? I do not have a feeding tube. I had a severe allergic reaction to the fentanyl patch and to morphine. I am able to take hydrochodone once or twice a day, but it just takes the edge off the pain. Nothing actually stops it. I have huge ulcers under and along side my tongue on both sides and white blisters (not thrush) on top of my tongue. The last time I wrote, I had not yet begun treatment. Because of encouragement from this site, I had the full treatment. However now I am once again in need to hear some experienced voices. What steps can I take to eat again?
Thank you!
Johanna

PharmGirl

Thanks for info on the heat with the patch. Its over a 100 in Kansas and its suppose to be higher this week. I will let my husband know this info since he has been trying to get outside in the evenings to cut down some voluntary trees that are starting to take over the back yard.

Thank you

Janet cg to Larry age 61 Tl,Nl, Mo Squamous Cell Carinoma of the tongue. Tx finished 5-31-07

Rich says thank-you for the replies, We will try the soup/ broth tomorrow and see how we get on! I read somewhere on the board about the Starbucks cold coffee, so I bought one to see if he could taste/swallow it....... We jumped for joy! Not only did he swallow some he could taste it too! The menu by mouth has just changed from water, to water and Starbucks! Rich is in agony with his throat, we are only 6 weeks out of treatment so I have been scanning old posts and printing them off, He feels "normal" knowing there are other people that have gone through this and took the time to share on here and that his symptoms are only to be expected.
From the bottom of our hearts.
Thank you.

One of the first things i tryed was cold custard. I can't care the stuff now! But when i first started easting again it was good to have something sweet.
& once i started, after not eating for three months, i tryed EVERYTHING! it was 12 weeks post R/T before i attempted anything other than water
6 weeks out is no time at all. I know how easy it is to become frustrated with progress. But you'll both get there!
All the best!

One of the first things i tryed was cold custard. I can't care the stuff now! But when i first started easting again it was good to have something sweet.
& once i started, after not eating for three months, i tryed EVERYTHING! it was 12 weeks post R/T before i attempted anything other than water
6 weeks out is no time at all. I know how easy it is to become frustrated with progress. But you'll both get there!
All the best!

Sammie - my son also lived on chicken noodle soup for quite some time and at first, only the broth but gradually adding more and more noodles. Flavored yogurt was another food tolerated and softly scrambled eggs also lasted more than other things. Milkshakes, going from chocolate, then strawberry and then vanilla but not very long for each one. When I attempted to "sneak in" some protein whey powder in his milkshake, he got that "what did you put in my drink" look on his face :rolleyes: and wouldn't drink it, warning me not to add anything to any of his food! I learned not to buy too much of any one thing because his tastes changed almost daily.