Update and a few questions - Please &Ty! - Oral Cancer Support

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!

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.

Sammie and Rich , The best advice I can give you is to pour Boost, Ensure or whatever you can get over ice to dilute it to kill the taste and the cold takes the sting out of it.

I know I'd not be here today if it weren't for that stuff. It's amazing what we'll swallow for survival. I can't taste or smell it now but it's all I can swallow, the ice cubes make it a treat in this hot weather.

To this day if I have to take pain meds. cough medicine now for the tickle in my throat, I dilute it with water to take the sting out of it.

Good luck and best wishes to all

Sammie,

David has and is still having trouble and we completed RT 6/22 we are 11 weeks complete and is still having trouble getting anything down except water. However he got "Kesslers Cocktail" which he never goes anywhere without. It is Lidocaine and Maylox. It gives his throat instant relief. Bout it only lasts about 5-10 minuites. This has allowed him to take it wait a few minutes then attempt Campbells Chicken and Noodle soup (A favorite here) vegetarian vegetable and few other things. He may get the soup down a little today but then tomorrow too sore. The Kesslers is really helping make progress. The smile on his face to have food by mouth is worth all of it. Ask your docs for this. It is a miracle worker....Good Luck

Sammie,

I know everyone is different. My husband is 5 weeks post treatment. Dan took great pleasure in getting a french dip sandwich down recently. He loaded it up with au just sauce and the beef was very, very thin. He could only get tiny bites down. It was a lot of effort to get it down, and it was slow, but he enjoyed the feel of food in his mouth.

Also, he just recently had his first McDonald's cheeseburger. And, scrambled and poached eggs work too for him.

His problem is that he fills up sooooo fast that he just can't get in the amount of calories his dietitian wants for him. Oh, and he likes slightly melted vanilla shakes...which we are adding protein powder to.

Tis a shame we don't have a dog. There have been many failed attempts at food here in our kitchen....many, many.

Hi everyone,
My dad is still in treatment, but we just figured out a good milkshake concoction that I thought I'd pass on.

1 can of Carnation VHC (560 cals.)
1 whole egg raw (~70 cals.)
1 raw egg white
whole milk (~50 cals.)
1 banana (~125 cals.)
pinch of baking soda
ice cream, if possible

Egg whites and baking soda are acid neutralizers and take out some of the sting of the Carnation VHC. He only has these shakes, because of the raw eggs, when his blood tests (neutrophils and white blood cells specifically) are normal. The bananas supply potassium and some added fiber and protein, in addition to flavor.

I hope this can help someone.

Stephanie

I was not even allowed water for 2 months because my flap was so iffy. but when I could, I found carnation instant breakfast did not taste bad like Ensure and boost, especially the chocolate flavor, tasted like chocolate milk. Then I tried Oatmeal with butter, sugar and milk. Oh that tasted so good. Then there was chicken and stars soup. The stars were not to big to go down. Then I crunched up saltines in it and it was so good. I am eating pretty good now even though they thought I would not because of my uneven teeth!! It's just fun now to try!!
Good luck to you. Keep on trying and chewing.

Dear Steph, that sounds like a pretty good shake-but I'll admit I cringed a little at the "raw egg" part. Have you looked into "Egg Beaters" as a possible substitute, or maybe you have cleared the raw egg with a dietician?. Amy in the Ozarks

Yes,

I worried about the raw egg thing myself, especially for those immune-compromised by chemo. While the egg is nourishing, it might be a source of bacteria in the raw state.

Deb

Raw eggs can contain many different pathogens that healthy immune systems find challenging to deal with and end up leading to serious illness and, on occasion, even death.

Immune systems challenged by cancer, chemo, and radiation are probably not up to the challenge, even a little bit, should one of these be present. I wouldn't suggest it and would recommend discussing this with your MO, dietician or nutritionist.

Cheers,

Mike

I totally agree about cringing at the mention of raw egg! I did the same to be honest. But I guess the bacteria in raw egg is comparable to bacteria in any other food. It's dangerous if it's introduced into an immuno-compromised person who is used to those specific bacteria. My dad had been adding raw eggs to protein shakes so his system is used to those bacteria. I just looked this stuff up and found that if you want to add raw eggs to your diet, you should do it very gradually. (For example, a teaspoon on days 1-3, a tablespoon days 4-6, etc.) But, even if his system is used to it, he would NOT eat the raw eggs (or anything raw) if his white blood cell count or/and neutrophil count were low.

I did a little looking around and this appears to be a very informative and useful link.
http://www.healingdaily.com/detoxification-diet/raw-eggs.htm

Remember, knowledge is power!

Cheers,

Mike

Let me clarify my said interest in the usefullness of the above link.

I can only say I agree with portion concerning raw eggs.

Some of the other information may or may notbe sound and/or supportable.

There is so "interesting links" on the site to say the least.

Mike

I am now five months post treatment (U of Chicago protocol with concurrent chemo and radiation followed by left side modified radical neck dissection [does anyone else here hate the word dissection--I do feel like a science experiment at times] and I am a very experienced gourmet cook who used to have a really sensitive palate. Now I can hardly taste at all, my mouth is still actively generating sores, my tongue has what my oncologist laughingly calls a divot and I have at least two separate mouth infections, besides thrush, which just adds color to the mix.

Eating has become an obsession. Although I am still largely PEG dependent, I experiment every day. The best friend I have is heavy whipping cream (which I buy by the half gallon at Costco). The heavy mouth feel of cream has been a comfort even during treatment. For months, the only real taste I had was very strong coffee with a huge amount of whipped cream. I have since added sugar, mostly for calories. This summer I progressed to Starbucks Dulce de Leche Frappiccino. From there to creamed soups, very smooth ones. I bought a new blender and a foodmill with a fine mesh strainer. A god send. One of my most recent discoveries is silken tofu. They sell it in all kinds of flavors. I just recently tasted almond for the first time, mixed with very ripe pears and some more cream. Not bad at all.

In terms of eggs, I cannot tolerate the texture of scrambled eggs, but eggs over easy (really one egg) with lots of butter on cream of wheat made with more whipping cream and sprinkled with a little finely grated mild cheese is my current dinner of choice. I have also tried blended home made creamed spinach with fish. It went down well.

As for pasta, I just choke, so that doesn't work yet at all. I can't imagine being able to eat a French Dip sandwich, no matter how drippy, but I was drooling (well...metaphorically drooling, since I have almost no spit left) at the thought.

Of course everything has to be consumed in very tiny bites. My kids bought me a colorful array of Gerber baby spoons which are nice because you cannot get too much stuff on them and they are padded. Everything also has to be consumed with water.

There are a few other things that have helped me, at least [and of course everyone here is in the same boat, but a different part. So what works like a charm for one is torture for somebody else.] Cream of potato soup gives me the illusion of eating something a little more sophisticated ,but plain old mashed potatoes and gravy are way too sticky for me. To the potato soup {very smooth and very creamy}, you can add all kinds of things like carrots, mushrooms, spinach, asparagus, squash, turkey, chicken. Just make sure it is pureed to a smooth texture. Some of the flavor comes through, as do the calories and some of the vitamins. I have bumped up the protein with silken tofu, with finely ground wheat germ and very smooth nut butters. Almond diluted in cream soup works extremely well.

This disease may not have captured the popular attention like breast cancer or lung cancer, but it certainly gives "pain in the neck" a whole new dimension of meaning. I am a medical professional and I cannot think of another thing except perhaps for diabetes, which so radically and permanently changes your life and that is assuming that things go really well.

What I have learned since diagnosis in January, is to treat the whole thing like a job which requires infinite patience and a tremendous sense of humor. You have to keep trying to eat, to chew to swallow, to add new things. Remember, if you don't use it, you lose it. Be sure to have a love/hate relationship with the PEG. The idea is to live without it, not with it.

I have been greatly helped by the experience and wisdom of people willing to share all kinds of information on this forum. I greatly appreciate the opportunity to share whatever I have learned in turn.

Bonnie Glen

Bonnie, what a great post! And I am thinking I am going to try the egg over easy on cream of wheat with cheese [will skip the extra cream-gotta watch my girlish figure]. Glad you are coming up with things you can eat that are also good for you. Amy in Oz