What are we looking at?

Hello @lovemymom1

I agree with @marciak9's comment about a change in diet. I have had three surgeries of the upper digestive tract for a rare form of cancer, and I've found that an eating plan low in fat, but also low in quantity is important. Small, frequent, low-fat foods will probably work best right now.

As an example, I may have several breakfast meals rather than one regular meal. Such as one scrambled egg and an hour later I may have a half of a banana, etc. or a half of a piece of toast, etc. This is the way I eat throughout the day. This may seem cumbersome, but it really helps to keep up nourishment, weight and energy when you have any digestive tract disorders.

I guess I am the only one who has not had any trouble eating. I have some trouble understanding then why this is. Just trying to help. Others have posted that a medication can help with appetite. And there is medication for nausea. Does your mom have 2 tumors (one in the pancreas and one in the liver) or just one in her pancreas? If it is 2 that would be a reason I had read about for no surgery. Mine was just one large 5cm mass.

The pancreas makes enzyme's that are needed to break down fat and waxy vegetables for the nutrients we need. With out these enzymes diarrhea happens. The actual name is steatorrhea. Bad gas pain can also occur. This can be so bad the only way you can leave your home and the close bathroom is not to eat. They have pancreatic replacement enzymes that will help with this. I stopped eating fat and discovered this was my problem months before my tumor was found. I would eat zero fat plain greek yogurt with unsweetened applesauce mixed in. Fruit for snacks. Frozen veggies with a can of diced tomato's for a low fat soup. There are other threads on this site about low fat or foods that people found to eat when they were having trouble.

I found a web page that showed what happened to me and I guess it is common enough. The tumor grew a closed off my pancreatic duct first. I went on pancreatic enzymes. It continued to grow and closed off my bile duct from my liver. This caused my high bilirubin. Bile is also needed to break down food so we can get what we need from it. I had some gall stones in there also. They were able to get the stint in and everything was fine. My pancreatic duct was still blocked but I took the replacement enzymes. The pancreas also helps control blood sugar. If you don't have enough insulin, then you cannot break down the sugar in your blood for fuel. This can cause weight loss and weakness. These all can be treated.

I feel bad for all the folks that have trouble with eating. I did drop some weight but frankly I could stand to drop that amount again. Wish there was a way to send it to the folks that need it.

Best wishes to all dealing with cancer.

Thank you everyone for the diet tips I'm going to talk with her and my Dad about it and see if it helps some of her symptoms.

Mom had her oncology appt. on Friday. As we were prepared for she is stage 4. What the doctor was surprised at is how aggressive it has been. Since Aug. 30th when she found out, it has already spread to chest and lymph nodes. He gave us 3 options of chemo, a milder, middle of line and a very aggressive one. He said he would suggest the middle which is 5fu, oxalliplatin and one other can't remember the name. She will be on this the rest of her life. He said she has about 6 mo maybe up to a year depending how the chemo works for her. She will be still doing the liver biopsy this friday, we asked if it was still needed and he said yes he would like to know exactly what he is dealing with and how to appropriatley care for her. His main concern is stopping the progression and having quality of life. They really liked the oncologist so I am so thankful they have had great doctors so far. So hard to process all of this and seeing the change in my Mom in such a short time. She has lost so much weight he said calories are the most important right now so he said no diet restriction although she still watches what she eats to not upset her stomach. So hard and I am so sorry to all of you going through this

Where did you have your treatment?

I started out with Hoag in Newport Beach who has very nice facilities, but is not a designated as a “Center of Pancreatic Excellence”. I switched to UCLA and they have an infusion center in Orange County. I’m actually undergoing SMRT radiation on my 1 liver lesion with Dr. Percy Lee at City of Hope in Irvine. Don’t be afraid to use different facilities for treatment at the same time; everyone has their specialties.

She was diagnosed august 30 and is still not on any therapy ?

He should be choosing her chemotherapy based on her gene mutation and her overall health as well.

Have you considered getting a second opinion?

Yep, it took her over a month to get into oncology. I don't understand the waiting either. She gets her port on Tuesday yet chemo is still a weekish away, we asked my them why they can't start before but not sure if they asked that or not. They have her chemo but I don't understand the waiting. I do know that they were shocked at the aggressiveness so my guess is since they didn't expect that the urgency wasn't there. They got her in faster than normal at least for our area. Where we live unfortunately healthcare is very difficult to get into appointments, very long waits. They are not getting a second opinion.

it took my brother four months to be scheduled for the Whipple surgery reacted as fast as we could calling to get appointments with doctors to have procedures done and see doctors they said that they would send it stat urgent but that is a long time to wait when you have this cancer

Oh wow I'm so sorry. Yes the health care is just so saturated right now an appointments are so hard to get into. We have a friend whose sister was just diagnosed with ALS and from the onset of her symptoms to her diagnosis it took 6 months for her to get into be seen. How was your brother doing today?