1. < Pancreatic Cancer

Support for caregivers: I feel helpless not being able to fix things

Posted by jenkins @jenkins, Feb 23 6:53pm

It’s only my husband and I with a dog. My husband just went thru his first chemo infusion and he had a terrible week. I feel I’m doing everything wrong.

I feel helpless not able to fix this problem. Seeing loosing so much weight and with little energy, it breaks my heart.

Does anyone have recommendations on type of foods that can provide him with energy?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 13 3:01pm
In reply to @spunkyj2 "My dad was diagnosed with Pancreatic Cancer June 2024...it has been a very difficult journey for..." + (show)
@spunkyj2

My dad was diagnosed with Pancreatic Cancer June 2024...it has been a very difficult journey for him...at 83 he chose not to do any treatments of chemo or radiation...he included all of us in his decision...we all told him we support him...my mom is his primary care giver...my dad has always been an active man. Owns an auto repair shop my brothers work with him...thankfully the business is right next to our house my brothers check on them frequently during the day...both sisters live close by...me on the other hand live 3 hours away..so when I get home its so hard to see the changes in him...godbless him he is a fighter. They have awesome Drs, one of which makes HouseCalls. He is on Pallative Care has had 2 stents...bile duct and most recently duodenal stent. Mom doesn't like to leave him for any length of time, he has fallen a few times. My parents have been married for 65 years..5 kids all married...10 grandkids all married 10 great grandkids and counting...so our family is very blessed..

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Hi @spunkyj2, my dad chose not to do further treatments when his colorectal cancer returned. We, too, supported his decision and the reality of that decision. I'm so glad that your mom has so much support near by.

Seeing the changes when you visit must be hard. Your dad sounds like a fighter, but also a realist. How is your mom dealing with everything? When you visit are you able to have heart-to-heart talks with him and/or your mom?

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gisele1976 | @gisele1976 | Mar 13 6:42pm
In reply to @jenkins "Thank you so much for your reply and kind words. You could not imagine how reading..." + (show)
@jenkins

Thank you so much for your reply and kind words. You could not imagine how reading your and others comments helps me get through the beginning of these journey.
Wish you the best for you and your husband as well .

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My husband wasn't able to eat much due to a stent. After a Whipple procedure, they opened up another pathway. He is able to eat more and has gained ten pounds. We did the shakes with ice cream if he can tolerate cold. Good luck.

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bunstuffer | @bunstuffer | Mar 18 8:12pm
In reply to @wf0439 "Hello, I am in the same situation as you. Except we have have cats 😼. My..." + (show)
@wf0439

Hello,
I am in the same situation as you. Except we have have cats 😼. My husband also has pancan and lost so much weight. He had 14 rounds of chemo and radiation. All of these are so hard on the body. Does your husband take pancreatic enzymes? This was a game changer for us. My husband has a good appetite now and enjoys his food. This is all I can ask. He eats everything he loves. I try to bake or cook his favorites. When he was on chemo he liked eggs, soups, casseroles, ice cream especially. He isnt fond of protein drinks but if I made him a milkshake I could sneak some in without too much flavor change. I hope this helps a bit. I know how hard this whole thing is, but I treasure each day he feels well and enjoys the things he loves. Hugs and prayers for you both ❤️

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Eating can be a problem. My husband had a brain bleed among other afflictions and didn't like many foods he liked before. The rehab hospital tried to give him Ensure but he hated it. His cousin, who retired as a RN in a care facility, told me to get Carnation Instant Breakfast. He liked that and even now long after his appetite is back to normal, he uses the vanilla or strawberry instead of milk on his cereal. I get the bottled high protein vanilla but I don't think strawberry comes in high protein.

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sue678 | @sue678 | Apr 4 2:33pm
In reply to @suelannon "You are definitely not alone. My husband had a distal pancreatomy in July 2024. They removed..." + (show)
@suelannon

You are definitely not alone. My husband had a distal pancreatomy in July 2024. They removed the Body and Tail of the Pancreas along with his Spleen. Many serious complications that set him back by several months. He lost over 50 lbs and was not eating much at all. Some days he would want something and I ran out to the store and brought it back only for him to tell me he did not want it. Other times, he would eat something and tell me it was really good so I would go ahead and make more and he would tell me he could not eat. Oncologist suggested CBD oil to help his appetite. I talked to a friend who had gone thru something like this with his Aunt and he suggested RSO Capsules. ( Rick Simpson Oil ) I did some research and was able to get them. They have been a Game Changer. He has gained 30 lbs back but if he does not take them,
he has no appetite at all.
I am at University of Penn today with him. They are doing a Lung Biopsy because he has nodules on his lungs and one has continued to grow. He also has a lot of pain in his right side, abdomen and stomach so after we get the results from the lung biopsy, they will do another PET scan to check his Liver,
It truly is a Journey that we are all on. My Husband and I will be married 50 Years in July and have 3 Wonderful sons and their Families who are always there when we need them. Going thru all of this together has made us even closer and love each other even more than we ever thought possible. We are trying to enjoy every day that we are together.

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My husband who has stage 4b prostate cancer is the same. He just had his 4th chemo infusion and his mouth is so tender today, he found the scrambled eggs too salty even though he loved them yesterday.

We are both 76, and we thought we would have a long life together, traveling and enjoying watching our grandchildren friends up. With uncertain future, we are trying to enjoy everyday we do have together - and our family, like yours, has gotten closer together

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3 replies
malel17 | @malel17 | Apr 4 7:58pm

Hi my mom has a liver transplant have you tried the boost high calorie protein shakes those seem to have the last calories. Best wishes

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56pan | @56pan | Apr 5 9:39am
In reply to @sue678 "My husband who has stage 4b prostate cancer is the same. He just had his 4th..." + (show)
@sue678

My husband who has stage 4b prostate cancer is the same. He just had his 4th chemo infusion and his mouth is so tender today, he found the scrambled eggs too salty even though he loved them yesterday.

We are both 76, and we thought we would have a long life together, traveling and enjoying watching our grandchildren friends up. With uncertain future, we are trying to enjoy everyday we do have together - and our family, like yours, has gotten closer together

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https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071
The "magic mouthwash" in that link was effective, if used 4 times a day, on the terrible mouth sores I suffered from due to chemo. You'll have to have your Dr. call it in to a compounding pharmacy that can mix it up for you. It's perishable and must be kept in your 'fridge. And I agree on the Boost supplement. It won't cause the mouth sore pain to flare. Hope this helps.

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sheridanb | @sheridanb | Apr 5 11:09am
In reply to @sue678 "My husband who has stage 4b prostate cancer is the same. He just had his 4th..." + (show)
@sue678

My husband who has stage 4b prostate cancer is the same. He just had his 4th chemo infusion and his mouth is so tender today, he found the scrambled eggs too salty even though he loved them yesterday.

We are both 76, and we thought we would have a long life together, traveling and enjoying watching our grandchildren friends up. With uncertain future, we are trying to enjoy everyday we do have together - and our family, like yours, has gotten closer together

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The nurses in the infusion room told my husband to rinse with water/baking soda/salt to help prevent the mouth sores and that has worked for him. I put about 1/4 tsp of baking soda and salt in a cup of water.
Like you... we're only 71 and were very active kayakers/hikers and I thought we'd be doing that for another decade at least. Trying to find other ways to spend time together, though he is finding walking difficult now. We just ordered a mobility scooter that hopefully as nice weather arrives we will be able to get outside with that.

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199 | @199 | Apr 5 12:37pm
In reply to @sue678 "My husband who has stage 4b prostate cancer is the same. He just had his 4th..." + (show)
@sue678

My husband who has stage 4b prostate cancer is the same. He just had his 4th chemo infusion and his mouth is so tender today, he found the scrambled eggs too salty even though he loved them yesterday.

We are both 76, and we thought we would have a long life together, traveling and enjoying watching our grandchildren friends up. With uncertain future, we are trying to enjoy everyday we do have together - and our family, like yours, has gotten closer together

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Better than the awful and expensive "magic mouthwash" is to try drinking a double "shot glass" of buttermilk daily. Wait 20 minutes before drinking anything else. My oncologist recommended the buttermilk. It works! & No, I am not a fan of the taste, but it is better than a sore mouth.

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56pan | @56pan | Apr 6 10:26am

I tried about everything and the magic mouthwash was the only relief from th mouthsores.

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mkinor | @mkinor | Apr 6 2:14pm

I took a cheep ginger ale to my 2nd chemo treatment and started drinking it right before and had no mouth reactions! Big difference from my first treatment!!! So took ginger ale to all of the rest of my twice a month for 6 months chemo treatment!!!
It worked Great for me!
“It did have sugar in it. Not sure if that besides the ginger, helped! I do know that if you burn your mouth on something hot, a spoonful of sugar stops the burn.
And I have tried it on a burn on my arm and it worked!!!”

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