This is Larry's wife. He was back in hospital 1/8-10/15 for hallucinations. It was supposedly due to drug interactions. He had 3 patches, Sancso, Fentanyl 75mcr and scaloppine. He cut his peg off and had to have another put in.
I think his ulcerative colitis meds are playing a part.
They wanted to put him on Levinox and seraquel but it was two to one and finally decided against it.
Once he returned home minus most meds he is much more himself.
He has stomach acid with a slow feed rate. He can't swallow anything.
But he only has 11 more radiations and 2 chemos.
They did MRI w/wo contrast and it was clear also EEG was good. That was good news. Hoping his serotonin levels out.
Has anyone else had this?
His cancer is BOT high 3 or low 4. He's had a tough time of it. Has had pneumonia, aspirated,
He keeps changing symptoms. But one constant has been stomach acid or feeling Urpy as He says.
He has lost 20lbs but had some to spare. He is on Joey pump but hasn't liked it.
I put a bow on the plug end so he can take to restroom.
Try hard to do things as a team. It seems to really help him.
Just wish I knew what to do for stomach acid.
Ya'll have been great. Thank you.
Larry's wife Cherry

Larry is home and doing better. He only has 10 more RADs and 3 chemos. He has PEG and has stomach acid frequently. Last chemo had hydration.
He frequently complains of stomach pain. Today he also complains of throat pain. He feels there is something in throat and feels this occurred after yesterday's RAD.

Hi Cherry, can you check with the doctors if Larry can control the stomach acid with Zantac? You can crush it with a mortar and pestle and give it to him through the PEG. John is also prescribed Prevacid which he takes daily to help his stomach deal with tube feeding. If he is not swallowing, try to get him to do his swallowing exercises at least. It is crucial.

Do you have someone who can come in a couple of times a week so you can have some time off? It is very hard to try and manage all that caregiving on your own especially when Larry is struggling. You don't want to burn out.

He gets Prilosec. I just got a cold and am now on couch. My daughter is here helping. He can't swallow. He says its like hitting a brick wall. He has no saliva. His Zolfran odt came out in same cond as when placed under his tongue 20 mins latter. If the Zolfran doesn't work then 1hr later he gets compazine. We were at hospital yesterday getting hydration, steroids and anti nausea.he gets all through peg.
Has anyone else had so much vomiting? His Joey pump runs 24/7 and rate is what he can tolerate somewhere between 25ml and 55ml.
He has a lot of bloating and bile. When he vomits the bile it burns his already radiated and sore neck. He gets easily dehydrated.
His feed is Peptamen 1.5.
I try to give him water when I can.
I appreciate any help. He still has 9 more rads and 2 chemos. Glad they redid PICC now it actually works. Just trying to keep him out of hospital and keep his body going. Larry is 70 I am 62.

Towards the end of treatments is when the going gets tough. Unfortunately, when having rads, it gets progressively more difficult as treatments continue. Even after the rads end, they are still working and the patient will continue to feel lousy. There is a bright spot, about 2-3 weeks after finishing rads most patients begin to feel a little better. The recovery phase can be a long process full of ups and downs. About the only thing that can help is to focus on what is within your control, that is his intake and pain management.

Make sure Larry is not in pain. Most of us have had to change our pain medication dosages several times thru out treatment and recovery. If the pain can be controlled, the patient is more likely to better manage their intake. If he can take a few sips of water several times during the day this will help keep his swallowing muscles active and make recovery much easier. Believe it or not, a patient's swallowing muscles can actually forget how to properly function and they have to relearn how to eat and drink again after rads.

Every single day his minimum numbers to take in are at least 2500 calories and 48-64 oz of water. Remember all the formula he is taking in has water. I suggest buying the little mini water bottles and setting a couple out every morning. This will help create a visual goal for him to achieve, hopefully making it easier to track. I know how difficult it is, Ive been there and struggled too.

Ask the doc for a prescription to get extra hydration a few times per week in the chemo lab. This will help him to feel a little better. At least it worked for me, I always felt like a new person after getting a couple bags of saline. If Larry is dehydrated, he will feel horrible. It happened a few times to me and I was hospitalized. Its not fun but it is always an option and if its necessary to get thru the next few weeks then it might need to be done.

Please keep in close contact with the doctors and nurses about Larry's problems. They are the professionals who need to watch out for his best interests. Too frequently, eliminating the cancer is the only focus and everything else is viewed as collateral damage and is ignored. As the caregiver, be a strong advocate and let the team know everything you explained above.

Hang in there and dont forget to take some time for yourself too. Being a caregiver is a tough job! Be good to yourself.

Best wishes!!!


PS... As far as the pump speed, its very low. If he has been at that speed for over 10 days, try bumping it up to 75 or 85. Give that speed about 5 days then push it up to 120ml. At the current rate of less than 60ml, its less than 2 oz per hour and not nearly enough. Ask for a nutritionist who is experienced with PEG feedings to get Larry on a formula with higher calories. You may need to add some water to it. Also make sure he is sitting up or at least has his head raised by a couple pillows when doing feedings.

You can give him the Zoltran dissolved in a little water and put through the tube. I have done it a lot of times and have checked with the pharmacist. John also got prescribed prochlorperazine (Stemitil) for the in- between times. If you have a cold, make sure you washed your hands before you give Larry anything. His resistance may be very low and he may catch whatever you have. Hope you'll get through this soon.

Cherry

I bought a pill crusher at the pharmacy for my mothers meds. It really comes in handy and I only paid 3 dollars for it. It has come down to just about all my mothers meds being put through her tube. There is just one pain pill I cannot crush but its small enough for my mom to swallow.

Ask the pharmacist about Larry's meds being crushed. I'm sure most of them can be. Its a heck of a lot easier.
I usually crush the pill and pour in a cup of water then pour it in the tube.

I hope he feels better soon.
Heidi

You can also ask about liquid meds. Many are available but unless you specifically ask, doctors normally write prescriptions for pill form. I do have to warn you, occasionally some liquid medicines my prescription insurance company refused to cover but pill form was ok. Situations like that make me nuts how someone sitting behind a desk can decide which medication a patient is "allowed" to have.

Talk to your pharmacist often, they sometimes can suggest alternatives and can even talk to you doctor about switch from pill to liquid on your behalf. My pharmacist is now my best friend.

This is Cherry Larry's wife. Larry hallucinated so badly he actually cut off his PEG. They replaced with a smaller tube and balloon.
The larger stoma (hole in stomach) has formula that leaks out and tissue growth which looks like blisters are growing.
I try hard to keep him clean.
I have asked for any oral solutions.
I did talk to Dr's and Pharmacist. But what I found most helpful was an app called Drugs.com it shows all meds and what they interact with. Larry also has Ulcerative Colitis and I found those meds were in conflict of many prescribed meds. They also are time released and with Peg size reduced too difficult to put through PEG. So we have discontinued right now.
I have been feeding Larry though the night and day. I follow his feeds 1 hr later with water. I actually use a feeding bag and Joey to run the water in. I think it helps to get food to empty and I encourage him to sleep on left side elevated. He has been tolerating feeds lately. So I am hopeful I am on the right track.
He has his Fentanyl patch which is 75. Sometimes he does better with the Norco than the morphine. It just depends on whats going on with him. I use the Zolfran for nausea and Pepcid and Protonics for acid. But I always check interactions and I also use the app Carezone.
Yes it is hard being a caregiver to the man I love and watch him suffer so. But I try to see this as something that will pass. I am grateful I have the help of my daughter. Larry also perks up when his grandkids visit.
I have had them help me change sheets and do laundry. They wear gloves and are careful not to come if exposed to anyone who has been sick.
I think the serotonin syndrome began after the Sancuso patch was added to his already extensive med cocktail. Signs I should have looked for were he talked a blue streak and wanted to buy his grand kids presents. I became somewhat alarmed when I saw he spent much more than normal. Then the nights were just crazy. He was building a subway in our bedroom, he tried to leave the house and even got mad and threw a foot stool. I didn't understand what was happening but knew something was wrong. So I called the Dr's and asked for a neurologic consult. That's how they discovered the serotonin syndrome. They also did EEg and brain MRI which were clear. Even though BOT cancer rarely goes to the brain.
Larry was back to his old self in 24 hrs. Now I watch carefully via the Drugs.com warnings of drug interactions.
Larry had also gotten me POA and Living will. I never realized the difference it would make. Oh he also had a mess in our check book so had to get help with that. Don't be afraid to ask for help. I even ask his daughter in CO to do things like ask family members to send cards.