Just short of 5 years, Pancreatic Cancer returned. It is small, but I don't want to wait until Dec

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shartwic
shartwic Member Posts: 1 *

December 13, 2018: I was diagnosed with Stage 3 Pancreatic Cancer. After Whipple surgery and Chemotherapy, the Pancreatic Cancer did not return until now, just a few months shy of 5 year anniversary (which they say is the red line for the recurrence of Pancreatic Cancer).

June 30, 2023: I just underwent 2 weeks of Stereotactic Radiation, the follow-up visit showed the Pancreatic Cancer was not neutralized. One Oncologist said it may be inflammation of nodule and not to worry, the second Oncologist said cancer was active, but we should just wait until December for the next CT-PET scan. The CT-PET scan has proven UN-reliable (Nodule dismissed as a collection of veins). A CT-PET scan in December 2022 did not reveal the cell activity, but a subsequent CT scan and biopsy in May 2023 confirmed the Pancreatic Cancer was back.

Now I am looking to get as many opinions and recommendations as possible to address the urgency of Pancreatic Cancer alive and inside of me. My initial conversation with a premier surgeon who performed my successful Whipple in 2018 thinks the NanoKnife procedure is a viable option. I've been researching other options such as Immunotherapy, Oral Chemotherapy, Surgery, Radiation or other Targeted therapy. I am also interested in any trials that can address this recurrent and currently small Pancreatic Cancer. I've seen many new successful Targeted therapies on YouTube. The solutions seem to be siloed in the discipline of Cancer Treatment

Please share your advice and ask questions and I will try to answer as best I can!

God Bless you all!

(I'm posting this in a rush - only because my Oncologists don't seem to care.)

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  • Daffodil65
    Daffodil65 Member Posts: 19 Member
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    I'm sorry that you are going through this. My husband was diagnosed in June of 2020 and received 6 months of Folfirinox treatments, nano-knife surgery (with Dr Billimoria at Northwest Community Hospital in the Chicago suburbs), and MRI-guided radiation at UW Madison... then had 6 months off. His tumor was not resectable after these treatments. Dec of 2022 his CA-19-9 levels started to rise. An MRI in March showed the tumor had increased in size... we pushed to get a biopsy of the tumor for genetic testing to help guide our next steps. The original specialists told us that the genetic testing did not yield any actionable information to suggest a treatment other than standard care... the next chemo treatment.

    In May, he started Gemzar and Abraxane... these didn't work very well for him and caused blood levels to drop. Then he started another treatment in July (5 FU - fluorouracil and irinotecan)... this ended up putting him in the hospital from internal bleeding, most likely caused by the Filgrastim injections to boost blood production.

    After taking 8 weeks off from treatments to try and find the best option for what to do next, he has started Keytruda in an off-label treatment that insurance wouldn't cover. The manufacturer is covering the treatment with financial aid. They are applying for clinical trials based on the genetic markers from the tumor. The doctor's and clinics that we have been dealing with have taken care of all of the paperwork to apply for financial aid and for clinical trials... that has been a Godsend.

    I don't know if this would work in your situation, but maybe it would be a good idea to talk to your oncologist about getting a biopsy of the cancerous tissue to do genetic testing. Also... contact PanCan (Pancreatic Cancer Action Network) to see if they can send a list of clinical trials in your area and a list of surgeons who do nano-knife surgery in your area.

    We have gotten very good information from Dr Kamgar at the Medical College of Wisconsin, Froedert Center. I don't know if this would be anywhere near your location.

    I hope that you find helpful info to guide your next steps.