1. < Pancreatic Cancer

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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lfitz | @lfitz | Jan 31, 2023

Pancreatic cancer is a terrible diagnosis and journey. My husband was diagnosed 12/2021 and it has been a downward spiral ever since. 1 step forward, 2 steps back. He did 6 months of chemo and 3 weeks of radiation and then went in for the Whipple and they refused to proceed. The surgeon found a tumor low in the abdomen that was cancerous. It was considered a distant metastasis and they closed him up and sent him home. He was supposed to resume chemo in 4 weeks but ended up with a duodenal blockage from the original tumor that we wanted removed. He had a GJ bypass surgery and then had to wait another 4 weeks to start chemo. Tumor marker has gone from 60 in September to now over 10,000 in 4 months. He is ready to stop treatment and go on hospice. No good days any more. He has lost his will to live. He has pretty much quit eating and drinking. It is terrible to see him suffer. I think if the surgeon had done the Whipple in September he would have been better off. At least mentally he would have felt he had a chance. I saw his eyes when the surgeon told him and he literally gave up. I will never forget his face at that moment. I wish I could give you some words of comfort. All I can say is “I know what you are going through “ .

REPLY
2 replies
gardenlady1116 | @gardenlady1116 | Feb 1, 2023
In reply to @lfitz "Pancreatic cancer is a terrible diagnosis and journey. My husband was diagnosed 12/2021 and it has..." + (show)
@lfitz

Pancreatic cancer is a terrible diagnosis and journey. My husband was diagnosed 12/2021 and it has been a downward spiral ever since. 1 step forward, 2 steps back. He did 6 months of chemo and 3 weeks of radiation and then went in for the Whipple and they refused to proceed. The surgeon found a tumor low in the abdomen that was cancerous. It was considered a distant metastasis and they closed him up and sent him home. He was supposed to resume chemo in 4 weeks but ended up with a duodenal blockage from the original tumor that we wanted removed. He had a GJ bypass surgery and then had to wait another 4 weeks to start chemo. Tumor marker has gone from 60 in September to now over 10,000 in 4 months. He is ready to stop treatment and go on hospice. No good days any more. He has lost his will to live. He has pretty much quit eating and drinking. It is terrible to see him suffer. I think if the surgeon had done the Whipple in September he would have been better off. At least mentally he would have felt he had a chance. I saw his eyes when the surgeon told him and he literally gave up. I will never forget his face at that moment. I wish I could give you some words of comfort. All I can say is “I know what you are going through “ .

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Thank you for sharing your story. It's a hard story to hear. Thoughts and prayers for you in a very difficult time.

REPLY
pendesk8 | @pendesk8 | Feb 1, 2023
In reply to @lfitz "Pancreatic cancer is a terrible diagnosis and journey. My husband was diagnosed 12/2021 and it has..." + (show)
@lfitz

Pancreatic cancer is a terrible diagnosis and journey. My husband was diagnosed 12/2021 and it has been a downward spiral ever since. 1 step forward, 2 steps back. He did 6 months of chemo and 3 weeks of radiation and then went in for the Whipple and they refused to proceed. The surgeon found a tumor low in the abdomen that was cancerous. It was considered a distant metastasis and they closed him up and sent him home. He was supposed to resume chemo in 4 weeks but ended up with a duodenal blockage from the original tumor that we wanted removed. He had a GJ bypass surgery and then had to wait another 4 weeks to start chemo. Tumor marker has gone from 60 in September to now over 10,000 in 4 months. He is ready to stop treatment and go on hospice. No good days any more. He has lost his will to live. He has pretty much quit eating and drinking. It is terrible to see him suffer. I think if the surgeon had done the Whipple in September he would have been better off. At least mentally he would have felt he had a chance. I saw his eyes when the surgeon told him and he literally gave up. I will never forget his face at that moment. I wish I could give you some words of comfort. All I can say is “I know what you are going through “ .

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I know how he feels.I was first diagnosed in July 2022.One told me I could get whipple ,one told me I couldn't.Ended up not having it .Took pacitaxel and abraxene for 6 months until it stopped working.Now on the 5-flu which is a harder one.I'm being tested for a gene mutation for a clinical trial.If theres no mutation I will have to try for another clinical trail.If there is none I will take this until it stops working or I can't stand it anymore.At that point I will go on Hospice also.Blessings to you .

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joanalc | @joanalc | Feb 1, 2023

Thanks for your comments. We feel his prognosis is good because the Whipple was a success. The chemo is heart wrenching, hoping he'll survive it.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11, 2023
In reply to @joanalc "Thanks for your comments. We feel his prognosis is good because the Whipple was a success...." + (show)
@joanalc

Thanks for your comments. We feel his prognosis is good because the Whipple was a success. The chemo is heart wrenching, hoping he'll survive it.

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@joanalc, just wanted to check in with you to see how YOU are doing. It is so hard to see a loved one suffer and to feel helpless. Have you found ways that you can be supportive and ease his discomfort (and yours)? Are you able to find space for you?

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joanalc | @joanalc | Apr 12, 2023

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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3 replies
gardenlady1116 | @gardenlady1116 | Apr 13, 2023
In reply to @joanalc "My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3..." + (show)
@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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marcia | @marciak9 | Apr 14, 2023
In reply to @joanalc "My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3..." + (show)
@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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1 reply
joanalc | @joanalc | Apr 14, 2023
In reply to @marciak9 "My Dr referred me to medical cannabis and they have pills that help my appetite." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 20, 2023
In reply to @joanalc "My husband had Whipple in Nov 2022, and is presently in chemo for 6 mths(with 3..." + (show)
@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??

Jump to this post

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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