severe weight loss with pancreatic cancer

When I was on chemo last year, I dropped 35 lbs rapidly. My oncologist prescribed Olanzapine to help with appetite. It did help. I did not gain weight, but didn’t lose more. Prayers for your wife. It is a difficult disease.

So sorry to hear what your wife and you are going through. I gave my dad Ensure 3x per day when he couldn’t tolerate eating. In 2022 when I started at stage 2 (I’m stage 4 now) went from 160 to 117 and was told by nurses that if I continued losing weight as rapidly I wouldn’t be able to continue chemo given how rough it is on the body. I started eating ice cream just to work up an appetite again and it worked. What state are you in? Please contact PANCAN to find a center of excellence for pancreatic cancer in your area and God bless on this journey.

My husband gets very tired after chemo and some nausea, but hasn't had any vomiting or diarrhea since his Oncologist prescribed Olanzapine. This was prescribed because the steroid medication that they add to the mix in the Folfirinox cocktail for nausea gives him the hiccups. The Olanzapine also makes him hungry, so he has a better appetite, and is helping him gain some weight back. He also has IV fluid every two weeks after each treatment.
It is really scary watching your spouse lose so much weight. I hope this helps.

The nutritionist prescribed mirtazapine for my husband, who had lost about 20 pounds. I actually didn't know it was something used for depression until I just now looked it up. But, his appetite has improved some. That may also be though that he is on a maintenance chemo now for the past 2 months after being on a horrible chemo regimen for 6 months. He says some foods are starting to taste good again which definitely helps him want to eat. Until now he has had to force himself to eat, even though he said everything tasted bad and he often ended up vomiting. So this is definitely better.
But yes, very scary to see your spouse refuse food/drink. We started going in for extra infused hydration every few days between chemo treatments as he was severely dehydrated and weak. This is the first week in months where he doesn't think that extra hydration is needed.
I've tried to get my husband to drink milkshakes or smoothies so I can add some powdered protein to them... but no luck on that yet.

I thank everyone for their suggestions and concern. Monday we were scheduled for another chemo treatment, but she collapsed in the waiting room, and ended up in the emergency room. No serious injury, but they gave her two IV bags of saline because she was so dehydrated.

I don't think her digestive problems are due to chemo. Before she started chemo, before she was even diagnosed with pancreatic cancer, she was having problems eating. I think all of her digestive problems are due to lack of enzymes. Although I fear she has become so habituated that she vomits long before any enzymes would be involved.

I am afraid that we made a big mistake using the local hospital, but we knew little about the disease initially. I think our local doctor and nutritionist hve little experience with treating/managing pancreatic cancer.

She has become so weak, and is now having problems with memory, I think we need to start thinking about hospice.

Funny story. About four years ago I got a call from a long time friend. She said she was calling to say goodbye. She had gone to the emergency room at her local hospital, was diagnosed with cancer that had metastasized, no hope of treatment. She was in the hospice wing, and expected to die shortly. I drove down to see her (I'd known her since high school, and she introduced me to my wife). got there, met her husband, and went up to her room. I'm thinking this is going to be pretty grim. Opened the door to her room and found three guys playing guitar, and a line of liquor bottles on the window sill. I said "what's going on?" and she said "we're having a going away party!"
I ended up spending two days with her, played all of her favorite songs, eating pizza and drinking Jack Daniels, and felt like at least I'd helped give her a decent send off.

I would wish I could do the same for Bonnie, but it doesn't seem feasible.

I was diagnosed back in Sept 2022. Went thru it all - 12 chemo, 28 radiation and I had an 11 1/2 hour whipple surgery. Mine was a very complicated surgery due to how the tumor was wrapped around a major artery and they had to scrape most of the nerve endings which created nothing but diarrhea. It has taking much longer to recover and I am taking shots for the diarrhea. However, I lost 52 Lbs and got down to 94lbs. I was also all bones. I tried everything but most would go right thru me. Finally, they put me on TPN which is an intravenous feeding solution. Lots of opinions on TPN and wanted it to be a last option but it has worked great so far. I have added 19 lbs so far with no infections or side effects. Perhaps, you can look into that. Praying for you both.

@tww60223, you may find further tips regarding weight loss and enzymes in these related discussions (even without having had Whipple surgery):
- Weight Loss after Whipple: What strategies helped you?
https://connect.mayoclinic.org/discussion/weight-loss-after-whipple-performed-on-2242022/
- Still losing weight: Does timing of Creon help?
https://connect.mayoclinic.org/discussion/still-losing-weight/
I'm so glad that you were able to send off your friend in such a joyous manner and getting a glimpse into hospice care. Hospice care is many things and most describe it as giving caregivers and family members the opportunity to just be a family member again - to love, comfort, cherish and to be released of medical-related tasks.

Do you have any questions about hospice care and how it differs from palliative care? Is Bonnie under the care of a palliative doctor now?

The situation may require more than just enzymes. With this amount of weight loss, Parenteral Nutrition (TPN) may be necessary to stabilize. A GI specialist needs to be consulted as to whether this is a situation of cachexia- defined as a wasting syndrome that leads to loss of skeletal muscle and fat. It is of metabolic origin and the estimate is that up to 80% of advanced cancer patients experience it making it common but poorly understood.

Until recently, clinicians didn’t have much in the way of treating it. A committee convened by the American Society of Clinical Oncology (ASCO) in 2022 put together the first guidelines on treating if cachexia is diagnosed. There are a few large comprehensive cancer centers with programs actively addressing the needs of these patients. PanCAN.org (877.272.6226) may have a list of centers specializing in its treatment. A Registered Dietitian with the credential C.S.O. (Certification Specialist in Oncology) is an important care team member that will have knowledge and advanced training in patients exhibiting cachexia. These R.D.’s are associated with high volume pancreas programs in NCI designated centers of excellence and cancer care and National Pancreas Foundation recommended Comprehensive Cancer Centers. If you have not set up a consult with an R.D., I would recommend doing so. They are extremely knowledgeable and helpful.

Each brand of pancrealipase differs due to differences in how they are manufactured. This includes the process of extraction of enzymes from the porcine pancreas, concentration and purification and the composition of the gelatin capsule. These differences can account for differences in performance among patients as well as differences in body chemistry. When a particular brand of pancrealipase is not effective in a patient, R.D.’s and manufasuggest evaluating a different brand.

I lost about 23 pounds after having the Whipple procedure. Initially it was difficult in regaining weight. It was a combination of eating very small portions continuously throughout the day to try and meet my calorie requirements. I started off on soft foods initially-puddings, yogurt, whipped potatoes, spoonfuls of oatmeal or cream of wheat. Eating standard, sit-down meals was out. I ate in the style of grazing being cognizant of nibbling on food throughout the day. I put bowls of snacks in various rooms. When I moved to another room, hiI ate something from the bowl. If I passed the kitchen, I did a few spoonfuls of yogurt. I never forced myself to eat a target amount in any point of time.

I made sure that I chewed my food thoroughly and slowly. With this type of grazing, smaller doses of pancrealipase is likely better when grazing. I found myself drinking a lot of V-8 juice. Less hassle pouring from a bottle pre-made then juicing and cleaning up. I didn’t worry about eating fats and sugar during this period. Calories any way I could get them was essential. Slowly I turned the corner and began gaining weight. As my strength improved, walking became easier and that let to gaining muscle mass, stamina and endurance. Appetite improved and I finally regained the weight back.

In dealing with queasiness, I found that drinking liquids on an empty stomach- particularly cold water- would trigger queasiness. To prevent it from developing into nausea, I found chewing a thin slice of fresh finder, hard ginger candy, sipping ginger ale or warm ginger tea suppresses it. Peppermint candy also works and aroma therapy with essential oils has been reported by patients to be effective. I found that always keeping bland food in my stomach suppressed nausea, particularly when receiving chemo. Whipped potatoes, saltine crackers, pretzels, pasta/noodles, rice worked best for me. Again I chewed slowly and thoroughly and consumes small amounts throughout the day.

There are three pathways that nausea can be triggered. In response to that, there are three anti-emetic types-each one to address a different pathway. There is no single combination drug that simultaneously address all three pathways. Patients do best in taking each type as it can not be determined which pathway might be the trigger. In patients with persistent nausea, they should ask there care team about prescribing olanzapine. In a recent study, it was recommended in chemo induced nausea over a related anti-emetic.

Welcome, @mvshelly. Your experience with total parenteral nutrition (TPN) is helpful. Going down to 94 lbs must've been worrisome for both you and your family. What, if anything, would you like to have known about TPN? What is the goal weight before possibly transitioning to enteral or oral nutrition?