1. < Pancreatic Cancer

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

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

wrolsen | @wrolsen | Mar 13, 2021
In reply to @colleenyoung "@baileycody and @wrolsen, just following up. @wrolsen - might I ask about the results of the..." + (show)
@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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 4, 2021
In reply to @wrolsen "My lung biopsy was canceled because the pre-biopsy scan showed the nodule had all but disappeared...." + (show)
@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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leighs2011 | @leighs2011 | Jun 16, 2021

Hi I found a woman on this website who has survived two recurrences and has NED. If you search for pancreatic cancer recurrences you should find her share! So hopeful. I have a recurrance after three years and had clean margins as well. Now the standard of care after chemo surgery chemo is radiation at UCLA. I missed the radiation after but had it done two weeks ago. i have mets in lungs but were small until 4 grew and were ablated. Now too many small ones so doing a drug trial to boost immune response. Since you didn't mention any other cancer site that sound even more lucky. Good luck and you sound like you are onto of it!

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leighs2011 | @leighs2011 | Jun 16, 2021
In reply to @wrolsen "Hi Tara. I will try to keep this short. In 2012 I was told I had..." + (show)
@wrolsen

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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I have a recurrance after 3 years of no evidence of disease in surgical bed and lungs all pancreatic cancer. So glad you are not ready to give upon, me neither but I am depressed trying to turn that around. I got lung ablations where they insert a probe and obliterate with heat or freeze the cancer cells. It is very accurate not hurting any other cells. Now there are too many so I'm doing a drug trial to help immune system reve up. Let me know how your treatment goes. I also had radiation. Leigh

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 16, 2021
In reply to @leighs2011 "I have a recurrance after 3 years of no evidence of disease in surgical bed and..." + (show)
@leighs2011

I have a recurrance after 3 years of no evidence of disease in surgical bed and lungs all pancreatic cancer. So glad you are not ready to give upon, me neither but I am depressed trying to turn that around. I got lung ablations where they insert a probe and obliterate with heat or freeze the cancer cells. It is very accurate not hurting any other cells. Now there are too many so I'm doing a drug trial to help immune system reve up. Let me know how your treatment goes. I also had radiation. Leigh

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Hi Leigh, it's a punch in the gut to hear that you have a recurrence. You sound like you have a good attitude and that you're working on reframing hope within this new reality. Can you tell me more about the drug trial you're doing? Is it an immunotherapy?

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wrolsen | @wrolsen | Jun 16, 2021
In reply to @leighs2011 "I have a recurrance after 3 years of no evidence of disease in surgical bed and..." + (show)
@leighs2011

I have a recurrance after 3 years of no evidence of disease in surgical bed and lungs all pancreatic cancer. So glad you are not ready to give upon, me neither but I am depressed trying to turn that around. I got lung ablations where they insert a probe and obliterate with heat or freeze the cancer cells. It is very accurate not hurting any other cells. Now there are too many so I'm doing a drug trial to help immune system reve up. Let me know how your treatment goes. I also had radiation. Leigh

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My last recurrence and treatment was in 2018. I had my regular scan and blood work on Monday, appointment with my oncologist today and he was so pleased he is now moving my scans and blood work to every 6 months. I'm finally gaining weight and feel better than I have in years.
Never ever give up, I know sometimes the future doesn't look very bright, I've been there but never stop fighting or give up hope.

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charliegolfrep | @charliegolfrep | Jun 21, 2021

My wife is in almost the exact situation. Whipple, after pre surgery chemo, then post surgery chemo. Scans every 3 - 9 months for 3 years. Then on routine scan, small spot on her lungs, metastatic pancreatic confirmed via biopsy. 5Fu, tough chemo for about 6 months. Last 2 1/2 years, series of SBRT radiation, chemo, gemzar / xeloda/ sbrta radiation on more spots. Lung tumors have remained stable. Next scan in August will tell where we go from here.
Have faith, sounds like us, just trying to manage her cancer for as long as we can.
In 2015 if someone would have said she can make it 6 years, she would have said I'll take it. Now we are going to try for another 6 years.
Have been fortunate, some chemo side effects over the six years but no pain
Good luck and God Bless

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leighs2011 | @leighs2011 | Jun 24, 2021
In reply to @wrolsen "Amanda, thank you for the form where we can share our journey and support other through..." + (show)
@wrolsen

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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Hello wrosen! I have a three year recurrence for a year now and nodules in lungs have been ablated however, new numerous 5 or so new nodules have shone up and so it was recommended to treat systemlcally with chemical trial to *hopefully) increase immune response. I am at UCLA Los Angeles. I've had radiation to pancreas before clinical trial. Sorry to hear about your recurrence and good luck with treatment! Thanks for sharing leigh

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