Recurrence after Whipple, Folfirinox and radiation (SBRT)

Posted by jengregs @jengregs, Dec 18, 2024

Hi all, my mom, 73, had Whipple in Feb 2023. Whipple was successful, totally resected but there WAS lymph node involvement. Did adjuvant Folfirinox for six month and 5 weeks daily radiation, has been on surveillance scans since.

Most recent scan shows two new masses in pancreas. Did a PET, showing moderate metabolic activity. Endoscopy was unable to get at the tumor for biopsy due to reworked anatomy. Ca-19 went from 88 to 150 over a few weeks. So this seems to be recurrence according to oncologist. Getting second opinion from original Whipple surgeon (could it be inflammation, etc). , oncology wants to start new chemo regime soon, Gemcitibine/Amaxabane.
Seems that we have to wait three-four weeks for blood test to see if immunotherapy is an option? Why so long?
Any faster/better options?
I don’t understand rumor tissue testing…would they send the “old” tissue? If they can’t get the new tumor tissue?
Could we get a second Whipple?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@mnewland99

Question not addressed to me and I can’t wait to read response from stageivsurvivor, but fir me based on anecdotal evidence from people on this forum is that it’s a 1x thing so if you have a situation where you have a lot or a few sporadic growths in your liver and especially new growths that keep popping up, then it’s not really going to be effective. It’s been about 13 months since my lesions were identified and I caught them real early on and started chemo and it’s been just the 2 and then 1 lesion ever since; God willing. I tried to choose a radiation specialist very advanced in this field and I actually found Dr. Percy Lee through a post somebody mentioned when he was at Harvard. In early January I’ll find out its effectiveness. Also, some of the procedures you mentioned work better on tumors versus lesions. Again, just my conclusions obtained anecdotally from posts and some readings.

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I also wanted to add that the reason I did it was because though the last remaining lesion shrunk from its original size of 1.6 cm to 0.9cm it seemed to stubbornly just stay at that 0.9cm size, so that why I decided to take another approach at it to try and “kill” that area of invasion. Good luck with your plan of action gamaryanne.

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Based on my knowledge coming from clinical research and a pancreatic survivor that has listened to case presentations, I recall a scenario where there was increasing CA19-9 but nothing had come up on imaging for quite awhile. Eventually recurrence was found along the surgical bed. I do not recall if imaging was by CT or PET. NanoKnife/IRE was the method of choice. The procedure was done at an NCI Center of Excellence, so a multidisciplinary tumor board evaluated all the particulars of the case in deciding to chose this over SBRT and Proton Therapy. Histotripsy was not available at the time.

NanoKnife was likely decided to be the most appropriate if the area is near critical structures (e.g., bile ducts, major vessels) and surgical resection is not feasible, as it minimizes damage to adjacent critical tissues.

If there is clearly a solid tumor meeting minimum size requirements, Histotripsy is the least invasive method. Recoverynis fast and in blasting a tumor with sound waves, it appears to cause an Abscopal Effect whereby antigens (proteins) on the cell surface have greater exposure to surveillance cells of the immune system. Essentially the tumor is more easily recognizable as “foreign” and antigen-presenting, dendritic, and macrophage cells are activated that can then target any. Circulating tumor cells and micrometastatic sites. Histotripsy is increasing in use but it has unique requirements athwart may complicate its use in those that had prior Whipple surgery. Fibrotic and scar tissues as a result of surgery can interfere with the penetration of sound waves. For this reason, a radiotherapy might be the next more likely treatment procedure.

SBRT is a strong alternative for patients who are not candidates for invasive procedures or when the lesion is amenable to radiation.

Proton Therapy and Histotripsy are less commonly used in this specific scenario. Familiarity is using proton therapy in this situation I am less familiar with. I do know that of the radiotherapy methods, proton beam therapy is the most precise with a pencil point targeting ability, thus reducing collateral Damage to surrounding tissue.

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@mnewland99

I also wanted to add that the reason I did it was because though the last remaining lesion shrunk from its original size of 1.6 cm to 0.9cm it seemed to stubbornly just stay at that 0.9cm size, so that why I decided to take another approach at it to try and “kill” that area of invasion. Good luck with your plan of action gamaryanne.

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Caution: The radiation approach for me was initially 100% the path I decided on based on readings from this site and outside readings and eventually after consulting with the radiologist that would do the procedure. My medical oncologist just agreed with the path I chose. So this was all based on my logic and my particular situation but obviously concluded with my the radiation oncologist.

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@stageivsurvivor

Based on my knowledge coming from clinical research and a pancreatic survivor that has listened to case presentations, I recall a scenario where there was increasing CA19-9 but nothing had come up on imaging for quite awhile. Eventually recurrence was found along the surgical bed. I do not recall if imaging was by CT or PET. NanoKnife/IRE was the method of choice. The procedure was done at an NCI Center of Excellence, so a multidisciplinary tumor board evaluated all the particulars of the case in deciding to chose this over SBRT and Proton Therapy. Histotripsy was not available at the time.

NanoKnife was likely decided to be the most appropriate if the area is near critical structures (e.g., bile ducts, major vessels) and surgical resection is not feasible, as it minimizes damage to adjacent critical tissues.

If there is clearly a solid tumor meeting minimum size requirements, Histotripsy is the least invasive method. Recoverynis fast and in blasting a tumor with sound waves, it appears to cause an Abscopal Effect whereby antigens (proteins) on the cell surface have greater exposure to surveillance cells of the immune system. Essentially the tumor is more easily recognizable as “foreign” and antigen-presenting, dendritic, and macrophage cells are activated that can then target any. Circulating tumor cells and micrometastatic sites. Histotripsy is increasing in use but it has unique requirements athwart may complicate its use in those that had prior Whipple surgery. Fibrotic and scar tissues as a result of surgery can interfere with the penetration of sound waves. For this reason, a radiotherapy might be the next more likely treatment procedure.

SBRT is a strong alternative for patients who are not candidates for invasive procedures or when the lesion is amenable to radiation.

Proton Therapy and Histotripsy are less commonly used in this specific scenario. Familiarity is using proton therapy in this situation I am less familiar with. I do know that of the radiotherapy methods, proton beam therapy is the most precise with a pencil point targeting ability, thus reducing collateral Damage to surrounding tissue.

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Well said stageivsurvivor! Do you agree that proton therapy better for tumors than lesions?

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@mnewland99

Well said stageivsurvivor! Do you agree that proton therapy better for tumors than lesions?

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From what I read, Proton therapy is used more commonly on well defined tumors and rarely on lesions.

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Hi all, I had Whipple February 2024 with clear margins, 12 rounds of Folfirinox April to September 2024, but scan October 2nd showed metastases to 2 spots, liver lesions and subcutaneous tumor in my belly. Started Gemcitabene/Abraxane November 1st and I seem to be responding well to it, however had a break in treatment due to possible infection in bile duct, all cleared up now. The lesions and tumor grew during periods of non-treatment, although each infusion does to bring my CA19-9 down. The tumor board at Princess Margaret hospital (center of excellence where I had my surgery and Folfirinox) are recommending SBRT since I have only the two metastatic areas, they have the MRI-guided capability. I have three questions: has anyone had SBRT and how did it go? If so did anyone continue to have Gemcitabene/Abraxane alongside the SBRT? Last question, my oncologist said that if the SBRT successfully destroys the lesion/tumor, I wouldn't be eligible for an RMC-6236 clinical trial because they need to have tumors to assess the trial efficacy - anyone involved with SBRT experience this?
I am meeting with the radiation oncologist on Monday.
Love to hear all your comments I find them so helpful.

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@dalegantous

Hi all, I had Whipple February 2024 with clear margins, 12 rounds of Folfirinox April to September 2024, but scan October 2nd showed metastases to 2 spots, liver lesions and subcutaneous tumor in my belly. Started Gemcitabene/Abraxane November 1st and I seem to be responding well to it, however had a break in treatment due to possible infection in bile duct, all cleared up now. The lesions and tumor grew during periods of non-treatment, although each infusion does to bring my CA19-9 down. The tumor board at Princess Margaret hospital (center of excellence where I had my surgery and Folfirinox) are recommending SBRT since I have only the two metastatic areas, they have the MRI-guided capability. I have three questions: has anyone had SBRT and how did it go? If so did anyone continue to have Gemcitabene/Abraxane alongside the SBRT? Last question, my oncologist said that if the SBRT successfully destroys the lesion/tumor, I wouldn't be eligible for an RMC-6236 clinical trial because they need to have tumors to assess the trial efficacy - anyone involved with SBRT experience this?
I am meeting with the radiation oncologist on Monday.
Love to hear all your comments I find them so helpful.

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I had 5 sessions of SBRT on a metastatic mass adjacent to my ureter which caused some fluid to stay in my kidney in July 2024, the only treatment after my Whipple in May 2023. As of the first C Scan after the procedure, the mass had shrunk and the CA-19 had decreased from 70 to 50 (approximately). My next scan is in 3 weeks, so I will be hoping for continued success. My oncology radiologist said results can take six months.
The procedure could not have been easier. I was given a prescription for anti-nausea which I did not need. I felt a little tired after the 5th radiation, but not enough to go home and nap. I am on no chemotherapy or other medication; I am an 84 year old female, underweight but active.
In summary, I am definitely impressed with my SBRT treatment.
Best wishes and courage, Carrie

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@carrie40

I had 5 sessions of SBRT on a metastatic mass adjacent to my ureter which caused some fluid to stay in my kidney in July 2024, the only treatment after my Whipple in May 2023. As of the first C Scan after the procedure, the mass had shrunk and the CA-19 had decreased from 70 to 50 (approximately). My next scan is in 3 weeks, so I will be hoping for continued success. My oncology radiologist said results can take six months.
The procedure could not have been easier. I was given a prescription for anti-nausea which I did not need. I felt a little tired after the 5th radiation, but not enough to go home and nap. I am on no chemotherapy or other medication; I am an 84 year old female, underweight but active.
In summary, I am definitely impressed with my SBRT treatment.
Best wishes and courage, Carrie

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This is really helpful and encouraging @carrie40, thank you so much for responding. I'm meeting with my radiation oncologist tomorrow. Best of luck to you!

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