Father's Recurrence After 4 Years

Posted by tarameaghanqb @tarameaghanqb, Oct 20, 2020

Hello,

Thank you for the opportunity to join this group. I'm here because we found out last month that my father has had a recurrence after 4 years. My heart goes out to each of you no matter where you're at in your or your loved one's journey with PC.

My Dad, now 71 yo, received a Stage 2b pancreatic adenocarcinoma dx in June 2016. Whipple at UCSF (Dr. Nakakura) in August 2016, clean margins, 3 of 21 lymph nodes positive followed by Gemzar/Xeloda and Radiation. He was also successfully treated for prostate cancer.

NED until confirmed recurrence in surgical site last month via endoscopic biopsy and scan, after approx 4 years of clear scans(which we know is a miracle). MD said no lymph nodes detected, growth is small in size. Port being inserted tomorrow in preparation for 12 weeks Folfirinox.

I've got so many questions right now…

I apologize as I'm struggling to clearly articulate my concerns here…I know that nobody can predict the future…My mind is racing…is this the last holiday season with my Dad? Will he be with us in 1, 2, 5, 10 years…

Would appreciate any and all real-life experiences and support with any of the following questions…

1) Is there anyone out there who has had a long-term NED following a similar recurrence?
2) Does it even matter that the recurrence is small in size and that there is no lymph node involvement this time?
3) Is it realistic to have a single recurrence, or have the odds changed now and to expect that recurrences will become part of his life now?
4) Is there such a thing as maintenance chemo?
5) Advice for surviving Folfirinox? Preventative measures to manage and make the process of side effect management easier?
6) Is anyone familiar with Nanoknife for treating a recurrenc

With appreciation,
Tara

@tarameaghanqb Hi, Tara. I was diagnosed with Stage 2b adenocarcinoma in May, 2014. I had my Whipple in June, 2014 followed by 6 months of gemzar. I was NED for 5 1/2 years. Last December we moved and I had to find new oncologist. He ordered a PET/CT that indicated that I had a recurrence in the surgical bed. My doctor wanted to do radiation and chemo but because of Stage 5 chronic kidney disease, we decided not to do chemo, just radiation. I had 25 rounds of radiation. I have been back to Mayo twice since my radiation. At this time the tumors are not growing so there will be no treatment. I will have a PET/MRI scan every 3 months to monitor my progress. If the tumors start growing, I will need chemo. Because of my kidney problems, I will have to have dialysis after each chemo treatment. Sorry I couldn't answer more of your questions. I have no idea what the future holds for me, but I thank God for every day of life. I am praying that things go well for your father

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Hi @tarameaghanqb, how are you doing? How is your dad?

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Hi Tara. I will try to keep this short. In 2012 I was told I had a cyst on the head of my pancreas, biopsy showed it was non cancerous but still needed to have whipple surgery.
After surgery was just told it was pancreatic cancer. Radiation and chemo followed.
In 2015 I had my regular 3 month CT scan and showed a nodule in the right lung and biopsy showed the PC had metastasized to my right lung, chemo and cyberknife radiation followed.
In 2018 new nodule showed up in right lung again and after 2 biopsys they were unable to say it was cancer but Doctors decided to do cyberknife again and stopped it from growing.
Now in 2021 after PET CT scan something suspicious showed up in the surgical bed and new nodule in right lung, next week biopsys on both and see where it goes. I'm now 69 years old, 9 years and 5 months from original diagnosis and not ready to give up yet.

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Hello @wrolsen and welcome to Mayo Clinic Connect where members trade giving and getting support. Thank you for sharing your PC journey. I am sorry to hear that 2021 has brought you another biopsy. I am glad to read you are not ready to give up yet!

Will you please come back and share what you learn next week?

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@amandajro

Hello @wrolsen and welcome to Mayo Clinic Connect where members trade giving and getting support. Thank you for sharing your PC journey. I am sorry to hear that 2021 has brought you another biopsy. I am glad to read you are not ready to give up yet!

Will you please come back and share what you learn next week?

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Amanda, thank you for the form where we can share our journey and support other through their's. I belong to another PC support group where our motto is NEGU (Never Ever Give Up). I would like to return after I get the results of my biopsy and share the results and where this journey will lead me.

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@wrolsen NEGU is officially my new favorite acronym. I will look forward to your return and update. Sending you the best this next week!

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My husbands situation sounds very similar. Diagnosed stage 2B in Jan. 2017, several weeks of chemo followed by Whipple in May of 2017, followed by more chemo. NED until Jan 2020 a tumor was found in the void that was created where the original tumor was removed, was not in the liver or pancreas. He had more chemo and 5 days of radiation. Again NED. In January 2021 during a routine follow up scan, a spot on his right lung that they had been watching for 3 years looked different. They were sure it was a lung cancer, and not pancreatic, but the biopsy proved them wrong, it was pancreatic cancer, they removed 10 percent of his lung and 27 lymph nodes, all the lymph nodes were clear. We’re waiting for our appt with his oncologist to see what the next step is. We have many of the same questions.

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@baileycody and @wrolsen, just following up.

@wrolsen – might I ask about the results of the biopsy and what's next for you?
@baileycody – I'm so glad that the lymph nodes were clear. What did the oncologist suggest going forward?

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@colleenyoung

@baileycody and @wrolsen, just following up.

@wrolsen – might I ask about the results of the biopsy and what's next for you?
@baileycody – I'm so glad that the lymph nodes were clear. What did the oncologist suggest going forward?

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We met with the oncologist last week and the surgeon today and they both agree that since all the lymph nodes were clear and they got clear margins there is no need for chemo or radiation. We’re back to our schedule of blood work every 6-8 weeks and scan every 4-6 months. Keeping our fingers crossed 🤞

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@baileycody

We met with the oncologist last week and the surgeon today and they both agree that since all the lymph nodes were clear and they got clear margins there is no need for chemo or radiation. We’re back to our schedule of blood work every 6-8 weeks and scan every 4-6 months. Keeping our fingers crossed 🤞

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Always good news to have routine bloodwork and scans….We love STABLE!

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@colleenyoung

@baileycody and @wrolsen, just following up.

@wrolsen – might I ask about the results of the biopsy and what's next for you?
@baileycody – I'm so glad that the lymph nodes were clear. What did the oncologist suggest going forward?

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My lung biopsy was canceled because the pre-biopsy scan showed the nodule had all but disappeared. As far as the biopsy of the area where they reattached my pancreas the tumor board is reconsidering the need for a biopsy because the spot in question is reducing in size also. So just waiting for tumor board recommendation. Feeling good about it.

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@wrolsen

My lung biopsy was canceled because the pre-biopsy scan showed the nodule had all but disappeared. As far as the biopsy of the area where they reattached my pancreas the tumor board is reconsidering the need for a biopsy because the spot in question is reducing in size also. So just waiting for tumor board recommendation. Feeling good about it.

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That sounds promising, @wrolsen.

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