This is Larry's wife as his isn't able to type. He is having a difficult tme with nausea. He's tried 3 different feeds, a Joey pump. He complains constantly about stomach and nausea.
He realized once home from hospital, that the very yellow phlegm comes up after chemo.
He had rad on Mon yesterday machine was down. Back for RAD today.
Does anyone have experience with a Joey Pump? He began hiccuping when pump began and continued until we shut off for sleep at night.
I have to disconnect to give meds and am concerned maybe air gets in. Or should I let his tummy rest before hooking him back up?
I disconnected Pump last night as he gets up and uses bath room by himself and I was concerned he would not be able to handle.
He sometimes gets confused, I believe this is from meds particularly phenergen.
His tongue and mouth is very dry. I give him glycerin swabs, sometime spray with Biotin.
We came home Mon from hospital. He had aspirated and caught pnuemonia.
I am his caregiver. My name is Cherry. He is the love of my life and I want to do my best in caring for him.
Thank you so much for the info you provide. You have also given he and me hope. Larry will go next week for another PET scan.
Thank you again and Merry Christmas to you all.

Hi Cherry, has Larry been prescribed Prochlorperazine (Stemetil) for nausea after chemo? What I have learned is that the patient really needs to take the Stemetil if he feels queasy. The advice we have got from doctors and nurses has always been to get ahead of the nausea and not wait until the vomiting starts. Is there any chance that he is dehydrated, especially if he is vomiting -- that can cause him to become confused.

John never had a pump, he just pushes the feed in using a 60 ml syringe. Maybe ChristineB or others who have had experience with a pump with post with suggestions.

Larry's mouth will be dry for a long time, that is unfortunately the effect of radiation. Even if he can't swallow, have him rinse his mouth with water or flat club soda frequently. That will help him feel better. If his mouth doesn't feel too raw, he can suck on a Xylitol mouth drop and spit out the saliva.

The creatinine level is an indication of kidney function and doctors, nurses and even our pharmacists constantly watched it. I don't know what they do about elevated levels but they should be the ones to tell you what needs to be done.

Because he has had aspiration pneumonia, for the time being, don't worry too much about getting him to swallow. He should exercise his swallowing muscles by doing dry swallows and his swallowing exercises to keep the muscles in shape. In John's case, eight weeks after treatment he was still unable to swallow because his epiglottis was so swollen from the radiation that it could not move. The surgeon told me that if John had knocked back a box of feed at that point, he would have drowned. Our MO also very bluntly told me that forcing him to swallow was something very dangerous. So, you really need to be careful about the swallowing.

You have to look after yourself too and make sure you get enough sleep at night. I used to go sleep in the spare room after the evening routine was done. I gave John a bell that he could ring if he needed me. That was the only way I could have a few hours to myself and really rest. It is a long road and you must conserve your energy so you can keep going.

Cherry, hiccups are a side effect from chemo. I dont think they are related to the feeding pump. Im very familiar with the Joey pump. Ask me any questions you have about it and Im sure I will be able to help you.

When using the pump, its important to have the patient lying on an incline with their head raised. Either prop them up with 3 or 4 pillows, raise the head of the bed by sticking a couple bricks under head of the bedframe or have him lay in a recliner to do the feedings. Try slowing down the pump and adding water to the formula. Usually those 2 things will make a big difference in nausea. After doing a feeding the tube needs to be rinsed with water (at least 60cc). He should also try to sit or lay still (head still inclined) for at least 30 minutes after finishing a feeding, an hour is even better. This will allow his stomach to settle before he gets up and moves around.

Best wishes!!


PS... Be good to yourself too. Being a caregiver is a tough job. Take some time for yourself so you can at least catch your breath once in a while.

Cherry, what are the doctors saying about the yellow stuff? It could be bile or it could be the chemo. It could dump to the stomach and kidneys. Either way, the doctors need to answer that question. Bile would cause nausea as well and chemo/rads will increase bile and make it much more uncomfortable when dehydrated. Many things you are pointing out are indicative of low hydration. Depending on the creatinine level, IV fluids are needed to protect the kidneys.

Don't be shy telling the doctors the nausea meds aren't effective. There are many choices and some work better than others, depending on the person.

For nausea he takes Zolfran, Phenergen, pepcid, Carafate and Sulfasalazine for his Ulcerative colitis. All go into tube.
Yesterday he was't well and was going to refuse Radiation. But they gave him a shot of phenergen and I gave him Xanax. He finally did treatment. Then came home and slept all day.
I only keep him on the pump during the day. I am concerned about him getting up during the night.
He did last night, my daughter found him in his office asleep at his desk.
We go to radiation again today then a break over the weekend.
He does clean out his throat from phlegm with the salt water and pinch of baking powder.
The meds are effecting his thinking at times. But I tell him it's still there, it'll return and he has me and the kids.
It was nice to have our granddaughter home from college. She came with to radiation. I know he was trying hard to be well for her.
Thank you all so much for your help. This is Larry's wife writing until he's well. Merry Christmas.

The mouth rinse should be 1 tsp baking SODA, 1 tsp salt and 1 cup of warm water. He should try to rinse 5+ times per day. It will help with with the mouth sores and keeping his mouth ph balanced.

I know its getting difficult but he cant quit. I tried to myself and between my nurse and son they wouldnt let me. Radiation gets progressively harder as treatments continue. It continues to work even after treatments end. Most patients struggle from the last week or 2 thru the first 2 or 3 weeks after finishing. Hang in there and focus on what is controllable... his intake. This is what will help him to get thru it a little easier. If you feel he isnt drinking enough, ask the doc for an open prescription to get hydrated a few times per week in the chemo lab. Its amazing how much better he will feel after a couple bags of saline.

To help get rid of the phlegm, ask the nurse to suction him out. This will help tremendously! He can get it done every day he goes to rads.

Cherry, one of the side effects of radiation is fatigue. It also seems to be cumulative. In other words, the more radiation he gets, the more tired he will be. Our RO told us that the radiation treatment should not be interrupted -- a weekend break is fine -- because it allows the cancer to repopulate. John had to do two sessions of radiation in a day during the Christmas and New Year breaks with six hours in between the two sessions. They may ask Larry to do that too, so be prepared.

Cherry you are an absolute champion and Larry is very lucky to have you.

Getting the right cocktail of meds for nausea is very difficult. The doctors gave me several different drugs and it was a bit of trial and error as to which one worked. I found Odanestron (Zofran) did nothing at all for me, the only think that worked at all was Pramin (Maxalon).

It will be a rollercoaster of sensations Larry has never felt before. Right now he is redefining what the word "nausea" means to him, and it will never be the same. The doctors should be told about every change in his symptoms. Every journey is different, but they usually have seen each symptom before, and have a range of options to make it better.

If you can follow what the doctors say and keep the machine going (eating, drinking, sleeping, toileting) he'll be ok. Its also mentally distressing when you have all these things happening and you're under a fog of drugs. I hope your treatment facility has access to a social worker or a counsellor, they are very helpful.

As has been said before, be sure to look after yourself Cherry. Larry loves you and needs you right now but we know its enormously taxing on the caregiver. Be sure to take time for yourself and talk to someone about what you're going through. Bless you both and I hope you have the best Christmas you can with your family.

Wow - thank you all so much. Larry is the love of my life and I would do anything I can to help him. Ya'll sharing helps us both so much. It so good to have you who understand. Thank you so very much. - Blessed Christmas, Cherry and Larry

ChristineB adding water worked!! Like magic!

Im so glad you are doing better! It takes some practice and trial and errors before most get the hang of using the tube. Most stomach issues can be easily resolved by slowing it down and adding water. Hang in there!!!