Husband had Whipple surgery and chemo: He's uncomfortable

Posted by joanalc @joanalc, Jan 31, 2023

I'm trying to be supportive, but he's to undergo chemo for 6 months, and have 5 to go. He's uncomfortable much of the time. Help!

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@wjk

If you don't mind sharing, what was the initial size of your husband's tumor? Thanks.

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Good Morning @wjk . The size of my husband's tumor was 5.8cm in the head of the pancreas. Partial response to neoadjuvant treatment and at time of removal was 5.4cm. No signs of metastasis on any scans (CT, PET, MRI, and diagnostic laparoscopy) but due to the size he is staged at IIA. 8 rounds of chemo (Folfirinox) pre-surgery and doing the final 4 now (last one is June 13th).

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@icelander19

Thanks for the info on Creon. I used to take enzymes - for quite a while after I had the surgery. But then decided to stop. I take Domperidone twice a day half hour before meals and it has helped. Still get the pressure of gas building up a lot of the time. When that happens, I get my heat bag in the micro and use that to comfort my tummy. It's something I can live with. How did you find out you have a hernia? I keep wondering about something around the incision area. I see a doc next week so will ask about that.

You're so right - 5 years is a great accomplishment. I have been very lucky. I wish the best to you as well.

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@icelander19 my oncologist scheduled a surgical consult for an endoscopy due to some symptoms I had been experiencing. Surgeon had a quick visual look at Whipple incision area while I was standing and then again while laying down. He informed me that the bulge was a hernia, and had me feel where it was. I had questioned the bulge long ago (a few months after Whipple surgery, once I started eating myla re normally) and was told that was just how I had healed. I assumed it was a result of the restructured digestive system. I now know what to watch for - at this time they don’t want to repair it as it isn’t causing any problems.

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@mamarina

Why only for those who have had surgery? But I did see news

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Not sure.

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@pendesk8

exciting news this morning.The germans have discovered a vaccine for pancreatic cancer specific to people that have had surgery.To keep cancer from coming back.They are using it at Johns hopkins and sloan kettering.

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Why only for those who have had surgery? But I did see news

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exciting news this morning.The germans have discovered a vaccine for pancreatic cancer specific to people that have had surgery.To keep cancer from coming back.They are using it at Johns hopkins and sloan kettering.

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Thanks for the info on Creon. I used to take enzymes - for quite a while after I had the surgery. But then decided to stop. I take Domperidone twice a day half hour before meals and it has helped. Still get the pressure of gas building up a lot of the time. When that happens, I get my heat bag in the micro and use that to comfort my tummy. It's something I can live with. How did you find out you have a hernia? I keep wondering about something around the incision area. I see a doc next week so will ask about that.

You're so right - 5 years is a great accomplishment. I have been very lucky. I wish the best to you as well.

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@icelander19

I am praying things will go well for you. I can't believe it's almost 5 years since I was diagnosed. Do you find the whipple surgery has left you with many issues after you eat. I am on a couple of pills that help somewhat, but always feel this pressure in my tummy.

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@icelander19 I take creon to aid with digestion. Dose is based on my weight and/or amount of fat/protein/portion size in my meal. Occasionally I will have some discomfort but not frequently. The info I was given was to take 500-2500 units of creon per kg of body weight with each meal, or 300-1800 units per gram of fat. To slowly increase dose until symptoms like gas, bloating and diarrhea disappear. I am at close to the upper limit and generally handle food well. Extremely fatty foods still bother me. I also just found out I have a hernia at the incision site that may be the source of some of the discomfort I do experience. Best wishes! Your five years is something to celebrate!

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I had the Whipple two weeks ago on 4/24/2023. I had nine chemo treatments prior to surgery. The surgery was successful, although, I still have a partially open incision. Also, my neuropathy has become worse. This has negatively impacted my sleep. It coincided with an increase in Gabapentin (which I stopped today). The first two weeks after surgery are tough, I am not going to lie. Pain management was a full time job. I was cleared yesterday to eat any food. There will most likely be an additional three chemo treatments. In a month or so. TBD. We keep fighting. It’s not easy.

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@gardenlady1116

Thanks for sharing your story. I have neuropathy and am due for a change in chemo due to an allergic reaction to oxiplatinum. I am hoping the neuropathy will get better. I had a great response with reduction in size of the tumor. I would have toughed out a little more of the oxiplatinum but it is out due to the severe allergic reaction.

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I was on oxaliplatin too and was supposed to get 12 doses. We had to quit at 11 and still wonder if we should have stopped sooner. Might not have such severe neuropathy. I have numbness that is in my feet and up my legs. Causes some balance problems. Was also on irinotecan and 5FU and folfirinox. I am trying to get some answers as to why after all this time, I get such pressure in my stomach area after eating. I try to keep the meals smaller - don't always succeed.

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@krfinlayson

I was diagnosed with stage three in Jan 2021. Had Whipple surgery followed by 12 folfirinox treatments. I also have neuropathy in my feet and hands. Also just found out I have a hernia at the surgical site. Am on insulin and creon. All are a small price to pay to still be alive! Bloodwork seems to indicate something is going on (rising CA19-9 and liver enzymes) but so far nothing shows on CT scan. Best wishes!

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I am praying things will go well for you. I can't believe it's almost 5 years since I was diagnosed. Do you find the whipple surgery has left you with many issues after you eat. I am on a couple of pills that help somewhat, but always feel this pressure in my tummy.

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