Anyone have experience with total parenteral nutrition with PC?

Hi @k13, I know it must be difficult for both you and your husband dealing with his condition. There is a discussion on the topic here that might be helpful to answer some of your questions:
--- TPN IV Nutrition?: https://connect.mayoclinic.org/discussion/tpn-iv-nutrition/

You mentioned you are hoping to talk with the doctor today. I find it helpful to write down questions I have before I go to my appointments. Do you normally write a list of all of your questions or concerns that you are trying to get answered for meeting with the doctor?

thanks for that connection. I usually do try and write down my questions for drs and bring whatever articles I have printed out. My husband's condition is changing so quickly, my questions sometimes seem irrelevant by the time we see dr. I had been researching clinical trials, eg., but dr says he is now "too sick" for trials.
He had an abscess on the liver which was not detected two weeks ago at our local CT hospital. He was admitted in CT and they said he had infection, but they never found the source, despite doing a ct scan. They discharged him w antibiotics. He was admitted to major Boston hospital on Wed, as he was very weak and vomiting. they did a scan and found an abscess (Not cancer). They did a procedure last night to drain the abscess, which went fine. The GI dr says there is a way to insert something in his stomach to go around the obstruction and allow him to eat a liquid diet without vomiting. It's called the GJ procedure. (gastrojejunostomy) . So, that is now under discussion, after the oncologist had mentioned only the TPV. So now I have new questions about the GJ procedure. Has anyone had experience with that? We never talked to the oncologist yesterday, because the hospital drs are now handling my husband's case, and they update the oncologist. He's got swollen ankles and low blood pressure, although the BP did have some better readings yesterday. There is a delicate balance w the fluids and the lasix due to swelling .... They wanted to address the abscess first before we could move on to the next step. Rough road now...... Thanks for everyone's input. I appreciate it.

@k13, There is a discussion started by @lfitz discussing the GJ bypass surgery. @jdd has also posted about a GJ tube and may have some thoughts or suggestions.

--- GJ (Gastro-Jejunal) Bypass surgery: Anyone have a GJ tube?: https://connect.mayoclinic.org/discussion/gj-bypass-surgery/

@k13 so sorry you’re going through all this.

I had a GJ tube placed in April of 2022 after an NJ tube trial. I’m now on my third GJ tube (replacement schedule is every six months) and while I wish I didn’t need it, it’s been life changing for me.

I regained the 50lbs I lost before the GJ tube and can now eat very small amounts orally when my nausea isn’t too bad, and I haven’t had a hospital admission related to my cyclic vomiting since placement.

My pump is portable and while I usually do feedings overnight, I will use the backpack to go out with it when needed.

One thing I would recommend if you do the GJ tube is asking for an EnFit connection. After using both the EnFit and non-EnFit, I’ve found the EnFit to be less messy, easier to keep the connection clean, and most importantly (for me) the EnFit can’t come disconnected with a tug.

The other thing that I’d ask is how the feeding pump/nutrition will be handled post discharge When my tube was placed at Mayo this was a very smooth process and a nurse came to the house to show us how to use everything. When we moved to Texas and could no longer follow with Mayo, getting things switched through the new providers was…less than smooth. I nearly ran out of bags.

Hope this is helpful, happy to answer any other questions you may have.

Hi- I was on TPN post surgery. It gave me nutrients and worked great.

I’m not familiar with new / other recommendation.

Before discharge, TPN was discontinued,

TPN is usually given in nutritionally critical situations as a bridge to something else. You may not be well served just with being seen by the hospitalists. Their care is limited to hospital care but they do not generally have any certification in a specialty. It might be difficult to just put your foot down and insist that the GI doctor also see you on a regular basis. Are the hospital doctors residents (doctors in training), medical students or fully qualified MDs. Care can vary widely. If you are not sure what is going on, sometimes you can ask your nurse about things and relay your concerns about getting information. Nothing more important in the hospital setting than advocacy, both for the patient if possible, and certainly for family who is able to advocate. Unfortunately, care can at times be brutal, mostly because people struggle with lack of information. Case managers are involved in discharged planning and also a good source of information about what follow up care will be available after discharged. Good luck with getting the information you need and hope TPN will help to get out of a critical nutritional situation.

My husband ended up in the hospital after 4 rounds of folfirinox because he essentially hadn't eaten anything in over a month. He was starving to death and had become severely dehydrated. His blood pressure had dropped between 90 over 60. His protein levels in his blood had dropped severely low and his red blood cell count was also low.

He was in the hospital for 3 weeks recovering. In the hospital he was given a Nastro tube to start giving him nourishment. He asked for a GI tube to be placed in him to take away the stress of trying to eat when he couldn't.

It has now been over a month home from the hospital. He is doing great! He is getting his strength back and beginning to rebuild the muscle that his body ate. We switched from the standard feeding that they prescribe in the hospital (Nestle Nutren 1.5) to Kate Farms 1.2 Organic Glucose Support. Nestle Nutren had corn syrup in it!!!! Pancreatic Cancer feeds itself on sugar and then on glutamine. Now my husband is getting all the nutrition he needs and is eating heathy as well.

Tube feeding just takes some getting used to. It is not horrible. Not sure how long he will need to be on it, but it is fine either way.

I hope for the best for you and your husband.

BTW - if you are on Medicare, they WILL pay for Kate Farms as well but need a prescription from your doctor with a reason why you need this premium feeding product. Needing a low sugar diet due to pancreatic cancer should be a good enough reason.

Beth

Thanks for that reply. It gives me hope. My husband in similar situation. He’s in the hospital due to dehydration and malnourishment. He couldn’t keep food down due to blockage near duodenum from tumor. His blood pressure also went way low but was better yesterday. Electrolytes low. Getting fluids via IV. Drs think they can put a stent in to open up passageway. Hoping for better report when I go to hospital today.