Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Posted by johndurbano @johndurbano, Aug 13, 2024

Looking to speak with others who have had a successful Whipple procedure, but cancer metastasized to your liver

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I had Whipple procedure in October of 2024 . I caught the cancer early stage 1 . My team suggested chemo first 8 treatments every 2 weeks would come home with chemo pump. Then had 3 weeks off and then started radiation and also took a chemo pill. This all happened before the surgery. Had surgery was out of the hospital in 5 days after the Whipple. I had to wait 3 months before I had CA-19 blood and a CT scan. My CA -19 blood test in September of 2024 was 190. When I had in done 3 months after my surgery it came back in the 3000's. My CT scan also showed that I have 5 spots on my liver. My biggest spot is 2.6 cm all the rest are smaller. Just had a liver biopsy and started chemo again ( different regiment) Hoping this will work. I feel great I have energy so I can't believe this is happening. If anyone out there has experience the same thing let me know. Would like to know how you are doing and what worked for you. I am keeping very positive!

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@kbower1611

I had Whipple procedure in October of 2024 . I caught the cancer early stage 1 . My team suggested chemo first 8 treatments every 2 weeks would come home with chemo pump. Then had 3 weeks off and then started radiation and also took a chemo pill. This all happened before the surgery. Had surgery was out of the hospital in 5 days after the Whipple. I had to wait 3 months before I had CA-19 blood and a CT scan. My CA -19 blood test in September of 2024 was 190. When I had in done 3 months after my surgery it came back in the 3000's. My CT scan also showed that I have 5 spots on my liver. My biggest spot is 2.6 cm all the rest are smaller. Just had a liver biopsy and started chemo again ( different regiment) Hoping this will work. I feel great I have energy so I can't believe this is happening. If anyone out there has experience the same thing let me know. Would like to know how you are doing and what worked for you. I am keeping very positive!

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2 questions…

1. What were your CA-19 numbers immediately after the surgery?
2. Why did you have to wait 3 months for a CA-19 test?
I received CA-19 tests immediately before and immediately after the surgery. I also received CA-19 tests from my surgeon, my oncologist, and my PCP each time I saw any of them. I receive a CA-19 test at least twice every 3 months… sometimes as often as 3 times. I too had the Whipple surgery and was diagnosed stage 1b.

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They did not do a CA-19 test after surgery. And when I went to see my surgeon a month after surgery I asked about CA-19 test and he said we do that at 3 months. That and the CT scan. Just can't believe it went to my liver that fast. Showing no signs anywhere else but the liver. I had the CA-19 blood test through out my treatment.

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@montyd

2 questions…

1. What were your CA-19 numbers immediately after the surgery?
2. Why did you have to wait 3 months for a CA-19 test?
I received CA-19 tests immediately before and immediately after the surgery. I also received CA-19 tests from my surgeon, my oncologist, and my PCP each time I saw any of them. I receive a CA-19 test at least twice every 3 months… sometimes as often as 3 times. I too had the Whipple surgery and was diagnosed stage 1b.

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Glad you are doing well! How long has it been since your Whipple surgery?

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@kbower1611

Glad you are doing well! How long has it been since your Whipple surgery?

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My Whipple was in June 2023 and I completed my last treatment in November 2023. I did 6 rounds of chemo pre surgery and 6 rounds post surgery… 5FU.

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@montyd

My Whipple was in June 2023 and I completed my last treatment in November 2023. I did 6 rounds of chemo pre surgery and 6 rounds post surgery… 5FU.

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My Whipple surgery was the first part of October of 2024 .

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I had a Whipple at Mayo Rochester in October 2024 as well and my scan last week showed two lesions on my liver, 2 cm each, consistent with metastatic disease. I am getting a biopsy on Wednesday this week. Otherwise, I feel great and was recovering well from my Whipple. My weight is steady, I have good energy and my blood work is good except for some elevation in alkaline phosphatase (ALP). My last scan in December was clear and my ctDNA test in January showed no tumor DNA and my CA 19 levels in December and February were at 4 (my tumor did not produce much CA 19)
@kbower1611 how are you doing and who are you seeing at Mayo ? How is the chemo working out and what does your onco recommend as next steps ?

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Hi, Raj A. I am doing well,feel good have energy . I go to Mass general in Boston. After my CT scan in January they started me on chemo again but the regiment that they put me on this time was Paclitaxel and Gemcitabine. Had a CT scan on March 12th and found out that I have a couple more new growth on my liver so that chemo regiment is not working. Went yesterday to Boston to meet the clinical trial Doctor and he wants me to go back on the 5fu whole regiment again. So I am starting that on Thursday the 20th. He has a new trial drug coming out in a month which he put me on the list for so hopefully I can start that soon. But I did also find out that I have a rare cancer which is KRAS Glu63Asp and KRAS Gin61His. So he is thinking this new trial drug would be perfect for me(let's hope he is right) I know they are discovering new drugs all the time just wish they could find the right one for pancreas cancer. CT scan did not show it being anywhere else other than the liver. Thanks for asking. Keep in touch and let me know how your biopsy comes out. I like this website because it's seems to be people from all over use it. And it's good to find out what other Doctors are doing with there patients so I can say Hey I seen someone tried this what do you think? We are all in it together! Fighting for are lives! But remember to stay positive.

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@kbower1611 Thank you. Sorry your first chemo regime is not working. Have you considered the RASolute 302 trial with the Revolution Medicine (NCT06625320). That may be right for you given your first line is not working and this is a pan-RAS inhibitor. It is a Phase 3 trial and it looks promising. They have 25 locations. Dana Farber is one of the centers. The trial opens up for enrollment next week, at least in California where I am. I would look into it before you get onto 5fu which could disqualify you from the trial- you know how strict those guidelines are.
My biopsy of the two lesions on my liver confirmed that they are cancerous and most like metas from my pancreas. I have the KRAS 12D mutation and I am looking a trial with the same drug (in combination with chemo). I am hoping to get onto this trial at a location closer to home in LA, Phoenix or Salt Lake City.
Yes, we are in this together. Fight on !

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@rajeshaji

@kbower1611 Thank you. Sorry your first chemo regime is not working. Have you considered the RASolute 302 trial with the Revolution Medicine (NCT06625320). That may be right for you given your first line is not working and this is a pan-RAS inhibitor. It is a Phase 3 trial and it looks promising. They have 25 locations. Dana Farber is one of the centers. The trial opens up for enrollment next week, at least in California where I am. I would look into it before you get onto 5fu which could disqualify you from the trial- you know how strict those guidelines are.
My biopsy of the two lesions on my liver confirmed that they are cancerous and most like metas from my pancreas. I have the KRAS 12D mutation and I am looking a trial with the same drug (in combination with chemo). I am hoping to get onto this trial at a location closer to home in LA, Phoenix or Salt Lake City.
Yes, we are in this together. Fight on !

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Thanks for the information. I have the KRAS Gin61His and KRAS Glu63Asp which I guess is rare. I know my clinical trial Doctor did draw more blood I think for more genetic testing. He has some new trials in mind.for me and he is the one that wants me to start on the 5fu until the new drugs become available. I will find out more I have a appointment with him at the end of the month. Good luck to you and Thank you for the information. I go to Boston for my treatments.

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