Pancreatic Cancer - No signs of spread, Whipple Candidate

Posted by mjennison @mjennison, Sep 27, 2022

Hi and so glad to be part of this group. My husband was diagnosed with Pancreatic Cancer this month. 5.8 cm in the head of the pancreas. CT Scan, MRIs, PET/CT Scan, Diagnostic Endoscopy all show no signs that the cancer has spread and he is a candidate for Whipple Surgery. However, his CA-19 was 1,900 (earlier in the month while experiencing pancreatitis after ECRP procedure to insert stent in Bile Duct and perform Biopsy). Latest CA19 has dropped to 1700. Doctors feel chemo (16 weeks) to ensure no messenger cells are there then Whipple in early 2023. has anyone experienced this? We would love to go in and do the Whipple now, but they are holding off until after chemo based on CA-19 tests being elevated. Thank you for your input.

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Greetings mjennison: Sorry to hear about your husband's diagnosis... but it's good news that he is a candidate for The Whipple. It's my understanding that only 15% of PC patients are candidates.

I was diagnosed in March 2022 with PC....stage 2. I'll be 69 in November and for the most part....in good health. Recently finished 6 months of chemo (which I tolerated fairly well), just started radiation/chemo treatments that will go for another 5.5 weeks. I then meet with my oncology surgeon (Dr. Douglas Evan, Froedtert Hospital, Milwaukee, WI) for follow up. If all is well, The Whipple will take place early December. I've read that the recovery time is lengthy.... but that's Ok.....golf season doesn't start here in WI until April/May, and I won't be in any shape or mood to travel to the Sunshine state.

One thing that concerns me a is that during my 6 months of chemo, my tumor did not shrink. My doctor is not at all concerned about this. He said there's an outer shell around the tumor so on the CT scan it will still show a similar size but the cancer cells inside do get eliminated.....sure hope so. My CA19-9 started at 318 in March, then elevated to 813 after 5 treatments of Folfirinox, then decreased to 207 at the conclusion of the 6 months of chemo. BTW....the Folfirinox was not working so in May, my oncologist switched me to Gemcitabine/Abraxane.

Best of luck to husband. I know you, as a spouse have a tough job ahead of you.....hang in there. My bride of 45 years has been at my side every step of the way. She's a wonderful person; God has blessed with her.....she is strong and has a very positive attitude!

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I ADMIRE YOUR "ATTITUDE" TOWARDS THIS JOURNEY.
SEEMS AUTHENTIC AND SO, PERHAPS HOPE FOR MY 55 YEAR OLD
DAUGHTER WHO MAY UNDERGO WHIPPLE IN COMING MONTHS.

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@tpl

Greetings mjennison: Sorry to hear about your husband's diagnosis... but it's good news that he is a candidate for The Whipple. It's my understanding that only 15% of PC patients are candidates.

I was diagnosed in March 2022 with PC....stage 2. I'll be 69 in November and for the most part....in good health. Recently finished 6 months of chemo (which I tolerated fairly well), just started radiation/chemo treatments that will go for another 5.5 weeks. I then meet with my oncology surgeon (Dr. Douglas Evan, Froedtert Hospital, Milwaukee, WI) for follow up. If all is well, The Whipple will take place early December. I've read that the recovery time is lengthy.... but that's Ok.....golf season doesn't start here in WI until April/May, and I won't be in any shape or mood to travel to the Sunshine state.

One thing that concerns me a is that during my 6 months of chemo, my tumor did not shrink. My doctor is not at all concerned about this. He said there's an outer shell around the tumor so on the CT scan it will still show a similar size but the cancer cells inside do get eliminated.....sure hope so. My CA19-9 started at 318 in March, then elevated to 813 after 5 treatments of Folfirinox, then decreased to 207 at the conclusion of the 6 months of chemo. BTW....the Folfirinox was not working so in May, my oncologist switched me to Gemcitabine/Abraxane.

Best of luck to husband. I know you, as a spouse have a tough job ahead of you.....hang in there. My bride of 45 years has been at my side every step of the way. She's a wonderful person; God has blessed with her.....she is strong and has a very positive attitude!

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Thank you so much for sharing your story. Your treatment sounds similar to what we will be going through and I admire your (and your bride's) positive "can-do" attitude. Best of luck to you on your journey and that all is well for the Whipple in December.

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I am hoping and praying that my treatment will be effective so that I can have the distal pancreatectomy.
I was diagnosed in March 2022( a week after my 51st birthday) with stage IV PC (metastasized to my liver - 2 small lesions)
Folfirinox did not work for me at all. When I started with chemo I had 1 lesion on my liver, after the Folfirinox, there were 2 and the tumor was bigger
It is my 3rd month on Gem/Abraxane, my C19 count was 3597 when I started and is currently on 357. Starting again with my sessions on the 6th of Oct, then 13th and 20th. Then we will scan. Liver function test is also coming down nicely, so I am PRAYING that by the end of the year I will be considered for the operation
All of the best to all of you, stay positive and keep on believing!

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@helenar

I am hoping and praying that my treatment will be effective so that I can have the distal pancreatectomy.
I was diagnosed in March 2022( a week after my 51st birthday) with stage IV PC (metastasized to my liver - 2 small lesions)
Folfirinox did not work for me at all. When I started with chemo I had 1 lesion on my liver, after the Folfirinox, there were 2 and the tumor was bigger
It is my 3rd month on Gem/Abraxane, my C19 count was 3597 when I started and is currently on 357. Starting again with my sessions on the 6th of Oct, then 13th and 20th. Then we will scan. Liver function test is also coming down nicely, so I am PRAYING that by the end of the year I will be considered for the operation
All of the best to all of you, stay positive and keep on believing!

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@helenar, I am sending you hugs and prayers that this is all working for you and you will be considered for the operation. Liver function test coming down and the decrease in CA 19 count sounds great. My husband starts chemo on Wednesday and praying for good news that his CA19 count starts to come down. All the best to you as well. Stay strong and positive and keep on believing.

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@tpl

Greetings mjennison: Sorry to hear about your husband's diagnosis... but it's good news that he is a candidate for The Whipple. It's my understanding that only 15% of PC patients are candidates.

I was diagnosed in March 2022 with PC....stage 2. I'll be 69 in November and for the most part....in good health. Recently finished 6 months of chemo (which I tolerated fairly well), just started radiation/chemo treatments that will go for another 5.5 weeks. I then meet with my oncology surgeon (Dr. Douglas Evan, Froedtert Hospital, Milwaukee, WI) for follow up. If all is well, The Whipple will take place early December. I've read that the recovery time is lengthy.... but that's Ok.....golf season doesn't start here in WI until April/May, and I won't be in any shape or mood to travel to the Sunshine state.

One thing that concerns me a is that during my 6 months of chemo, my tumor did not shrink. My doctor is not at all concerned about this. He said there's an outer shell around the tumor so on the CT scan it will still show a similar size but the cancer cells inside do get eliminated.....sure hope so. My CA19-9 started at 318 in March, then elevated to 813 after 5 treatments of Folfirinox, then decreased to 207 at the conclusion of the 6 months of chemo. BTW....the Folfirinox was not working so in May, my oncologist switched me to Gemcitabine/Abraxane.

Best of luck to husband. I know you, as a spouse have a tough job ahead of you.....hang in there. My bride of 45 years has been at my side every step of the way. She's a wonderful person; God has blessed with her.....she is strong and has a very positive attitude!

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Good to read your treatment journey as I think I will be doing the same after evaluation and staging.

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@tpl

Greetings mjennison: Sorry to hear about your husband's diagnosis... but it's good news that he is a candidate for The Whipple. It's my understanding that only 15% of PC patients are candidates.

I was diagnosed in March 2022 with PC....stage 2. I'll be 69 in November and for the most part....in good health. Recently finished 6 months of chemo (which I tolerated fairly well), just started radiation/chemo treatments that will go for another 5.5 weeks. I then meet with my oncology surgeon (Dr. Douglas Evan, Froedtert Hospital, Milwaukee, WI) for follow up. If all is well, The Whipple will take place early December. I've read that the recovery time is lengthy.... but that's Ok.....golf season doesn't start here in WI until April/May, and I won't be in any shape or mood to travel to the Sunshine state.

One thing that concerns me a is that during my 6 months of chemo, my tumor did not shrink. My doctor is not at all concerned about this. He said there's an outer shell around the tumor so on the CT scan it will still show a similar size but the cancer cells inside do get eliminated.....sure hope so. My CA19-9 started at 318 in March, then elevated to 813 after 5 treatments of Folfirinox, then decreased to 207 at the conclusion of the 6 months of chemo. BTW....the Folfirinox was not working so in May, my oncologist switched me to Gemcitabine/Abraxane.

Best of luck to husband. I know you, as a spouse have a tough job ahead of you.....hang in there. My bride of 45 years has been at my side every step of the way. She's a wonderful person; God has blessed with her.....she is strong and has a very positive attitude!

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What chemo were you on for six months?

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@lvtexas

What chemo were you on for six months?

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Greetings Ivtexas......I was on Folfirinox from March until May; Folfirinox was not effective so I was switched to Gemcitabine/Abraxane which brought my CA19-9 numbers down a bit but my tumor did not shrink from either treatment. I just started radiation/chemo this past Monday and will continue with those treatments (5 days/week) until the end of October....hoping to see better results with this.

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@tpl

Greetings Ivtexas......I was on Folfirinox from March until May; Folfirinox was not effective so I was switched to Gemcitabine/Abraxane which brought my CA19-9 numbers down a bit but my tumor did not shrink from either treatment. I just started radiation/chemo this past Monday and will continue with those treatments (5 days/week) until the end of October....hoping to see better results with this.

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@tpl where or who is giving you radiation treatments? My care plan started 9/30 with first Folfirinox chemo. Weird neuropathy already. Cold sensitivity is supposed to go away after 48 hours. Thank you for your info. I think my care plan is very similar.

Are you getting different side effects from radiation? Good luck on progress.

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Been a while since posting. Quick review, wife, 59 years old, diagnosed in march. 30mm tumor in the tail / body of the pancreas. Had Oxiplatine and 5FU for two months and was hospitalized for 9 days with sever side effects. After recover she was scanned and tested again...restarted at 70% for two rounds and 80% for the 7th round. She was referred for surgery. Post op revealed a 80mm tumor (at the largest area) and cancer likely in the local area / tissue. The post op anesthesia recovery was very hard on her to the point were she had to be restrained for 5 hours. Oh and she had a distal-pancroectomy splenectomy. The team is recommending radiation and now Gemcitabine.

Questions remain...how well is the radiation and are there clear and well defined side effects?
Same question for Gemcitabine?

Each time she agrees and moves forward with a phase of treatment the effectiveness is not as expected and the side effects are much more than we have been taught or expected.

In all honesty she is considering withdrawing from treatment and focusing on remaining quality of life.

Right now the only impact if moderate back pain which is under control with low dose of oxycodone 5mg / four hours.

Any insights or sharing is so appreciated.

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