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Advice needed about my Mom
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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Your Mother is definitely a fighter and survivor in what she has gone through. During my 11 years as a survivor having been stage IV with the rare (1%) Acinar Cell Carcinoma, I experienced and had to overcome a great deal of adversity.
To address the fullness, acid reflux and loss of weight:
I initially had Whipple surgery and was put on the proton pump inhibitor (PPI) omeprazole (generic of Prilosec). On occasion when I felt acid reflux after having a late meal, chewing 2-4 Tums tablets quickly resolved the discomfort. Issues with fullness were addressed by going on supplemental pancreatic digestive enzymes as I was exhibiting Exocrine Pancreas Insufficiency (EPI). I was not producing enough amylase, lipase and protease to thoroughly digest food. That resulted in gas production, feeling full and experiencing malabsorption leading to weight loss. Being prescribed the pancrealipase Creon and adjusting my eating habits of consuming more easily digestible foods, less liquid intake during the meal, chewing slowly and thoroughly, smaller portions more frequently, and eliminating the harder to digest vegetables unless I took the OTC product Beano (enzyme alpha-d-galactoside needed to digest vegetables that are the more complex oligosaccharides.
Flatulence
https://flatulencecures.com/vegetables-that-cause-gas/
I did a very aggressive chemo regimen of full-dose of the original formulation of Folfirinox from 2012-2014. Today’s (m)Folfirinox starts of at 20% less concentration of 5-FU, Irinotecan and Oxaliplatin. Dealing with the side effects was a bit of mind-over-matter and using pre and post medications to control symptoms. My cancer was not going to control me. I practiced gratitude every day. I opened me eyes and got out of bed…it was a good day!
When I learned I had a targetable gene mutation, my search took 14 months until the ideal trial opened. During that time I stayed focused. Working at a large medical center, every day I saw patients who experienced horrific accidents and I’m sure considerable pain. Yet they endured and were thriving. They became my inspiration. If they could do it, so could I.
After doing 46 cycles of chemo over 24 months, (24 of Folfirinox and 22 of 5-FU/Leucovorin), I was NED. The clinical trial was 18 months of maintenance monotherapy. It is an easily tolerated oral medication and I still take it 8.5 years now. Doing all that chemo and staying the course was well worth it. I had invested a lot between having surgery and the aggressive chemo. I wasn’t about to give up. It paid off. Having been stage IV, I not only achieved NED but was declared cured at the 10 year point by a number of oncologists. They all agree doing the chemo played a significant role in my surviving and now thriving.
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11 ReactionsThank you for sharing your remarkable story! It is an inspiration.
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2 ReactionsI wish I had more advice to offer...Maybe a therapist would help her (and/or you) to get through this big life event. Even the most well adjusted people can benefit from mental health support when facing momentous challenges. Perhaps her oncologist can recommend a therapist with experience.
Maybe you could tell your mom about this site? She could get a lot of support from other warriors, like "stageivsurvivor" who posted earlier.
You deserve recognition for helping your mom. Good for you!!
Shout out to "stageivsurvivor," you are remarkable! And it was very kind of you to post your story!
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3 ReactionsThe Pancreatic Cancer Action Network (PanCan.org) has their Survivor and Caregiver Network made up of survivors and caregiver volunteers who serve as mentors. I have served as a mentor for several years to both patients and caregivers. By callingPanCan.org, they will attempt to match a patient to a survivor with the same or similar diagnosis. And when possible, will match with someone in the same geographic location.
PanCan.org also maintains a list of support groups by State that meet in person or via Zoom. A number of the medical centers with a pancreas program conduct support groups. For PanCan.org, call 877.272.6226, M-F, 7:00am-5:00pm PT. Craigs Cause Pancreatic Cancer Society based in Canada has an active support group moderated by a nurse and a social worker. There may be more info on their website CraigsCause.ca
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2 ReactionsI was Stage 2B. I had a successful Whipple and chemo at the strong urging of my surgeon. I research every possible way not to have to do chemo, but did it, and have been NED for 10 months. It worked so I'm glad I did it. But I still hate chemo. I don't know if I would do it again.
The two most helpful things I was told were "You are in the driver's seat. Whether or not you do chemotherapy is up to you. It is your choice." and "Just commit to the first treatment. You don't have to commit to all of them. Just commit to one (or 2 or 3) and then you can reevaluate. You have the right to change your mind."
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5 ReactionsAmazing. Thank you for sharing stage iv. Im baffled that they would initially do a whipple on a stage 4 patient
Im stage 3 with smv involvement. And it wasnt an option for me.
What constitues stage 2b? I have a current dilation of 8mm with IPMN in the head of the pancreas. This was discovered incidental to diverticulitis. It was seen in 2013 but was only told about it 9 months ago. Monitoring via MRI every 6 months and EUS/ERCP with benign biopsies. Doc is encouraging a prophylactic Whipple which I just can't justify at this point. Thanks for any advice or tips you may have. Best of luck to you!
Each stage has certain parameters. I was stage 2 B in my tail. That means it was small and localized with no metastases. It was removed along with my spleen. The size of the tumor was 1.5 cm.
I would not get a Whipple if it is not indicated. But look at women who have the gene for breast cancer. Some elect to have a mastectomy so they cannot develop cancer. It's a tough decision. But if you are being monitored they will be able to see if it changes and then maybe you will need the surgery. Best of luck.
Thank you so much for getting back to me! It helps greatly to hear that I may be doing the right thing. Did you have symptoms or was it found incidental to something else? Sounds like you are in a good place.
Best of luck to you too. Where did you have your surgery?
What helps me (my mom is the one with pc but deals with it way better than I do) is watching survivor stories on PanCan, You Tube, etc. It helps keep my hopes up!