Advice needed about my Mom

Posted by asingh90 @asingh90, Mar 11, 2023

Hello everyone, my Mom was diagnosed with a rare form of pancreatic cancer (arising from an Intraductual Oncocytic Papillary Neoplasm) in July 2020. She had a successful Whipple procedure. She then was supposed to have 12 sessions chemo, but they only did three because of side effects (which were later proved to be non-chemo related) and the fact that this type of pancreatic cancer is very rare and there wasn't a lot of evidence to show that the chemo would or would not work. They thought they caught it early enough and that she would be fine without the chemo.

Unfortunately, the cancer came back in December 2021 with a nodule in the peritoneum. It was removed laproscopically and was NED until September 2022 when the cancer spread to the ovaries and more of the peritoneum. She had her ovaries and omentum removed in Oct 2022. Unfortunately, the cancer back all of a sudden much stronger in her scan a few days ago and it is spread all over her abdomen. There is an immunotherapy clinical trial that our doctors feel may be very helpful because it directly targets her rare genetic fusion, but the trial is still not open. They are saying any day now, but there is no official start date. As a result, our oncologist is saying it is time to start chemo in the meantime until the trial begins because he does not want the cancer to get worse. She managed to avoid chemo for this long, but not anymore.

My Mom is doing pretty well overall in that she has a good amount of energy, works out 3-4 times a week, and does her normal routine. She even took an international trip in January for fun. The only thing worrisome is that for the past month and a half, she is getting full much faster and experiencing more acidity, which has led her weight to fall by 4-5 pounds over three months.

She is very upset that she has to go through chemo and it is taking a toll on her mentally. She was hoping she would get on the trial by now and that she would have avoided chemo. I don't want her spirits to get low because of chemo. Does anyone have advice on how to keep up her spirits during this time? She is very nervous about it and while she is very optimistic normally, now she is very down. Thank you in advance for reading this long post and for the advice!

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@skiball

Thanks, Beth. My own doctor is at UPMC in Pgh. I got a second opinion at MUSC in Charleston, SC as we live in SC. A third opinion at Mass General in Boston. Pgh feels the whipple may be inevitable. MUSC said not necessarily. Boston said given my good health, no underlying conditions, good physical shape and my relatively young age (70) that doing it now prophylacticly would give me a better outcome. I am currently monitoring via every 6 months with MRI. I have had zero symptoms and this was only found incidental to a bout of diverticulitis. So I just can't justify doing the Whipple at this point anyway. I appreciate yours and anyone else's opinions or thoughts. Thank you!

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It's amazing how many divergent opinions we can get, but it does give us choices. Good for you for getting so many different opinions! I concur with your decision. The Whipple is a HUGE operation, with 6-8 week recovery plus takes a while (months) to regain core strength. I had a relatively "easy" recovery and like you, I am/was in great health to start with. However, I definitely needed the Whipple with my diagnosis. I understand the concept of prophylactic interventions, but you would be going through an awful lot for something that sounds like it is not yet clear needs immediate intervention. Please keep us posted. Warmly, Beth

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@bethf

It's amazing how many divergent opinions we can get, but it does give us choices. Good for you for getting so many different opinions! I concur with your decision. The Whipple is a HUGE operation, with 6-8 week recovery plus takes a while (months) to regain core strength. I had a relatively "easy" recovery and like you, I am/was in great health to start with. However, I definitely needed the Whipple with my diagnosis. I understand the concept of prophylactic interventions, but you would be going through an awful lot for something that sounds like it is not yet clear needs immediate intervention. Please keep us posted. Warmly, Beth

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Thanks so much for your support, Beth. I hope you continue to have a good outcome! I have an EUS/ERCP scheduled for tomorrow morning, to see if there are any changes at the cellular level. At least I know I've done all I can to stay on top of this.

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Massachusetts General is a top place. I would give their recommendation a lot of weight. As a person with pancreatic cancer, if I had had the chance to prevent it I would take it.

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