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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joanalc,

My sense is that one should accept chemo, adjusting it as required to be able to tolerate it, for as long as possible - constantly doing this kills cancer cells wherever they are.

Pancreatic cancer tumors are often killed by chemo, but the cancerous cells have already spread - to a variety of locations.

I don't know what the longest should be ... if it were me, I would find a world class oncology center, and ask them to build a long term treatment plan.

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My husband was diagnosed in September 2022. He was a candidate for Whipple which was originally scheduled for September, 2022. Due to high CA-19 and size of tumor our oncologist and tumor board recommended 12 rounds of chemo, 8 pre surgery, 4 post surgery. He had the Whipple on Feb 15, 2023. by week 6 he started to feel like he was getting back to himself. By week 8 he had all drains and feeding tubes out, scar is healing well. He was staged at 2A and tumor markers and lymph nodes were clear, CA-19 was 14. We (optimistically) thought he would not have to do the remaining 4 chemo infusions, however it was still recommended due to tumor size (shrank some but not by alot) and some cells were live when tumor was removed and risk of microscopic cancer cells. He had his 1st of 4 infusions on 5/3 and will complete by 6/13. As you all know, this journey is hard, scary and alot of unknowns. This Mayo site has helped me alot over the past 9 months, I feel like you are all friends. Prayers to you all.

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My dad had the 6 month chemo plan after his whipple. We were told it was to eliminate any undetectable cancer cells that might still be present. However, he was unable to tolerate the chemo due to running very high fevers and chemo was stopped after just a few weeks. He is 2 ½ years out from his surgery but is still regularly scanned to look for recurrence of the cancer. If the chemo had been better tolerated, my dad would have continued the full 6 months because the doctor felt it would maximize his cancer-free time.

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Profile picture for joanalc @joanalc

My husband had Whipple (stage 2B pancreatic cancer)in Nov and is in chemo for 6 mths. His latest cat scan looks good. Oncologist is recommending another 6 mths of tx: 6 weeks of radiation combined with chemo pills. Does this sound appropriate or excessive?

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Hi Joan, I'm tagging other members who have experience with stage 2B pancreatic cancer like @marvinjsturing @allis9560 @lfitz @mimishell and @anto1nette. Keep in mind that everyone is different and a treatment plan for one may not be the same as for someone else, even when you have the same stage of cancer. Other factors are also considered.

@joanalc, I think you're asking good questions and should get answers from his oncologist to better understand why they are recommending another 6 months of chemo and radiation. There are likely very good reasons. You could start with questions like:
- If the CT scan looks good, why is the additional 6 months of treatment necessary?
- Is there concern of cancer spread?
- Can we talk a treatment vacation?
- How can side effects be managed?

What questions would you add?

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My husband had Whipple (stage 2B pancreatic cancer)in Nov and is in chemo for 6 mths. His latest cat scan looks good. Oncologist is recommending another 6 mths of tx: 6 weeks of radiation combined with chemo pills. Does this sound appropriate or excessive?

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Profile picture for joanalc @joanalc

My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3 to go). It was recommended that after 4-6 wks following chemo, he go for 6 wks of daily radiation combined with chemo pills. He hasn't gained any weight (he lost 30 lbs). Any suggestions/recommendations??

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Hi @joanalc, how is your husband doing? Has he started to gain weight?

In addition to the helpful posts from @gardenlady1116 and @marciak9, I'd also like to tag @bb21 @dakotarunner @artgirl2 @thull who may have helpful experiences to add.

You might also appreciate this related discussion:
- Post Whipple: how long before your stomach "woke up"? https://connect.mayoclinic.org/discussion-manage/post-whipple-how-long-before-your-stomach-woke-up/

Does your husband take Creon? Have you spoken with an oncology dietitian?

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Profile picture for marcia @marciak9

My Dr referred me to medical cannabis and they have pills that help my appetite.

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Many thanks for your responses. His appetite is good, but still no weight gain 😞

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Profile picture for joanalc @joanalc

My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3 to go). It was recommended that after 4-6 wks following chemo, he go for 6 wks of daily radiation combined with chemo pills. He hasn't gained any weight (he lost 30 lbs). Any suggestions/recommendations??

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My Dr referred me to medical cannabis and they have pills that help my appetite.

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Profile picture for joanalc @joanalc

My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3 to go). It was recommended that after 4-6 wks following chemo, he go for 6 wks of daily radiation combined with chemo pills. He hasn't gained any weight (he lost 30 lbs). Any suggestions/recommendations??

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Thank you for sharing your story, evaluation by a dietician familiar with pancreatic disease might be of benefit. I saw a dietician specializing in hepatobiliary diseases at Memorial Sloan Kettering Cancer Center. My visit was a telehealth visit. Perhaps something like this would be helpful. I saw a dietician who wasn't familiar with pancreatic disease and she didn't really know how to advise me. Your oncologist or surgeon might be able to direct you to someone who could be helpful

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My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3 to go). It was recommended that after 4-6 wks following chemo, he go for 6 wks of daily radiation combined with chemo pills. He hasn't gained any weight (he lost 30 lbs). Any suggestions/recommendations??

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