Ok...I have read the posts and want to share whats going on with hubby and ask for suggestiosn and help. He has had the three chemo with cistoplatin and taxcotare...he finishes his 35 rad treatments on 1-21-13! Praise God! He is a weak puppy, has lost so much weight, has PEG tube, has soooo much mucous that it makes him sick! We have the napkins, cup etc for him to spit and it is constant! Please let us know when this may get better! He feeds but then later throws up because of the mucous. He rinses with the baking soda/salt wash, biotene and also does lidocaine with sprite or gingerale. He has not been actually swallowing water or such which concerns me for him. He wants to know what to expect after the last rad treatment and what to expect in the coming weeks after treatment. He wants to get back to work but really needs to gain weight and strength. Suggestions for both of those issues are welcome as well. Right now Im concerned about him not feeding because of the mucous and his weakened state. He really should not lose any more weight. His weight is 164 right now

Paul also finishes his 35th radiation treatment on 1/21/13! Two weeks ago his oncologist ordered a suction machine for the mucus. It sucks it right out of his throat giving him some relief. Fluids also became an issue so the doctor also ordered an IV set-up for home. This saves the trip to the doctor just for hydration. I've noticed he is much more alert and himself. These were most helpful if your insurance will cover it.

I too am wondering what to expect in the coming weeks. Much to my surprise, he started eating soft foods over the weekend. It took awhile but he got it down. I really wasn't expecting this to happen for quite awhile yet.

**** from KP5 ****

Hi Teresa,
One thing I want to mention is that you will want to start your own post under the forum of In Treatment. That way you will get lots of answers.
You are coming into the very hard part of tx. It's doubly hard because we always think we are almost there and they will start getting better, but, it takes about 6-8 weeks for that to actually happen. You will both have to be patient and he will probably lose more weight since this is the hardest time. I know this is not what you want to hear, but it's fact. I can remember when people wrote to me and told me this and I was really, excuse my language, pissed. I refused to believe it, but boy were they right and at least I knew so I didn't panic too much.
We didn't have a suction amchine. They sound wonderful. Maybe you should try that. Another thing is to be sure he doesn't lay down for awhile after using the PEG. Scrambled eggs are one of the easiest things to eat. They are good to because they are protein and he's gonna need that to heal.
Move your post to the other forum and you will get tons of responses. Feel free to write me back too.
Hang in there. We KNOW where you are and can tell you it will get better in a few months. My husband went back to work in the Arctic of Alaska January 5 after finishing tx at the end of October. It can be done, but it's hard. He also lost 56 lbs, but he had it to lose.
Blessings,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

Sorry I got the message and response out of order. Thanks Kathy for your help. This ia a difficult thing to watch and to see the pounds fall off is almost too much!

The very best thing you can do to help your husband is push the nutrition and hydration. Many hospitals offer hydration so if he isnt already getting it done, ask for it. By getting hydrated a few times per week, he will immediately feel a little better.

Nutrition plays a huge role in everything. Without getting enough intake he will feel awful. Every single day he needs a minimum of 2500 calories and 48 oz of water. More is even better, especially if he is losing weight. Then I would suggest pushing for 3500 calories daily. I know it sounds like way too much but its NOT! Fighting cancer is burning up calories like crazy and also at the same time his body is trying to rebuild itself too.

Boost makes a high calorie drink which has 560 calories per can. This can be added to his formula. If he doesnt already have a feeding pump, ask the doc for a prescirption. You can get one at a medical supply company. they will bring it out and teach you how to use it. This way while he sleeps you can have him take in another 1000ml which will help make a big dent in getting his daily minimums. With the pump running, he should sleep propped up on pillows. Plus you will want to flush the tube good after he is finished with the feeding. The pump can run while he sits watching tv during the day too.

Your husband must swallow water every day. He does not want to end up with even bigger issues down the road. His swallowing muscles can very quickly 'forget' how to swallow. For his own good he must do it even if it hurts. I know its not easy but he has to swallow every single day, even if its just small sips of water. Try to encourage him to do this at least 4 times a day.

This is when things begin to get very difficult. It will likely get worse before it gets better. The first 2 or 3 weeks after finishing are the worst of it all. The radiation continues to work even when its finished. After about 3 weeks post rads he will slowly begin to have a few good days and start to realize he is finally in recovery mode.

Hang in there and please keep posting. We will help you get thru this.

Thanks for the info and will relay what I have learned. I'm pretty sure he thinks i'm a nag. I get so frustrated with him because he is so non compliant with drinking and swallowing. He wonders why he is sick all the time and I continually say drink! He may sip a few times a day at most! He wants to go back to work but to look at him and the forthcoming weeks, its a BIG undertaking on his part! He listens to what is suggested by Drs but does not do what is suggested. He takes Xanax, pain pill, saliva producing pill, and tries to feed unless he gets sick. The mucous is driving him crazy to the pint he won't feed through tube. He thinks it is the formula (Fiber Source plus NH)
He always complains about his mouth tasting like crap! I say drink!! He does not get any where close to the recommended water or feedings right now. Not any of the Dr or practitioners seem to offer solutioners to the mucous and foul mouth smell. Help!

It's encouraging to think he might eat a bite of something! I pray it will be so! He tried the suction machine but didn't think it helped so much so we sent it back. We will see what the coming weeks have in store for us! The Lord is my strength!

[quote]Much to my surprise, he started eating soft foods over the weekend. It took awhile but he got it down. I really wasn't expecting this to happen for quite awhile yet.[/quote]
That is fantastic news! Eating before even finishing the full rad blast and the post tx cook off and cool down. Keep us informed how it goes, taste bud reports too. Don

Is he constipated, which may be possible by some symptoms you describe..nausea, vomiting, crap breath, appetite loss, and can be caused by some feeding formulas, dehydration, opioids, and other medications. Change the nutrition if it can be a cause of the problems. I also did not see an anti nausea medication mentioned, which may help. Water rinsing also helps mucus, sleeping on an incline, Mucinex, Robotusim, seltzer water rinse, papaya or pineapple juice, and meat tenderizer rinse mix in liquid, even the juices mentioned, helps cut the mucus. Good luck with everything.

Hi try picking him up a waterpik - running it on the lowest setting with Luke warm water and maybe a bit of alcohol free mouthwash will clear out the guck and make him feel fresh for a bit. I still love mine.
Alo try getting club soda - flatten it - let it sit at Room temperature if he's sensitive to temp. Then he can swish and swallow it will help his throat and hydrate him. Plus it too helps with he guck. This is an later native to the baking soda mixture which you can swallow. It was recommended by my hospital. Best of luck.

Hi Teresa,
Sorry I got confused as to where your post was. I was thinking it was a question on a different post. My Mom just went in the hospital Saturday with pneumonia, so I probably shouldn't even be on here!! Just a passion to try to help.
Kathy