Need some support

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Hooandtrue93
Posts: 3
Joined: Tue May 11, 2021 10:28 pm

Need some support

Postby Hooandtrue93 » Thu May 20, 2021 2:47 pm

Howdy Y'all,

My mom was diagnosed with duodenal adenocarcinoma in late February after a month of urgent care visits for what they thought was just stenosis. Also unfortunately they found that it had spread to 7 out 13 lymph nodes and was invading the pancreas. The "good" news was that it is intestinal phenotype (both late stage duodenal adenocarcinoma and and duodenal adenocarcinoma in the 1st and 2nd portion of the duodenum tend to be more pancreobiliary/gastric phenotype which are more aggressive). Also she was indeed able to have a whipple surgery done with clear margins. Shes doing well so far, with her 4th round folfox coming up. However we finally got the ctDNA back from when the sample was taken before chemotherapy started and unfortunately it is positive for ctDNA which is causing all kinds of worries and concerns on our end. The Doctor (getting treated at the brand new INOVA Schar in northern Virginia which fortunately has access to most technologies) doesn't recommend follow up imaging at this time as her halfway check in is coming up in a month (her last CT scan was march 5th and it was clear and he is beating the drum that this is slow growing so that micrometastesis still wouldn't be visible). Also no change in course of action as folfox adjuvant will continue and he will retest ctDNA after 5th cycle to guage response.

1) I was wondering if anyone here had positive ctDNA post op that cleared with chemo?

2) I was wondering if anyone had any information to help me make sense of it all and any advice to help with my mom like foods that helped or tips and tricks? Ive read so many studies but I think Im done with that; my mom is not a statistic and reading studies might give me a sense of control but it doesn't change anything now. Day by day. Although I will not stop bookmarking clinical trials that sound interesting.
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma (Intestinal phenotype as opposed to Pancreatobiliary, Gastric, or mixed).
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months

User avatar
Green Tea
Posts: 414
Joined: Mon Oct 24, 2016 10:48 am

Re: Need some support

Postby Green Tea » Fri May 21, 2021 4:31 am

Hooandtrue93 wrote:...(2) I was wondering if anyone had any information to help me make sense of it all and any advice to help with my mom like foods that helped or tips and tricks?...

Welcome to the Forum! In answer to your second question, I think that there might be some people here who could give some nutrition and food advice, since this is a common topic here for colorectal cancer diagnoses. Your mother's other issues seem to be mainly concerned with the pancreas/gall bladder/duodenum/stomach, which are not topics usually covered on this Forum, and the Whipple procedure is not one used for colorectal cancer. Nevertheless, there might be a few members here who could give some support on topics related to food and nutrition during FOLFOX treatment.

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Whipple procedure
https://www.mayoclinic.org/tests-procedures/whipple-procedure/about/pac-20385054

Image

IMAGE of What is Removed (Whipple procedure): https://www.cancer.ca/~/media/CCE/7966/8e152ae47af866d023efe7f1ffc6b42a.png

Inova Schar Cancer Institute
https://www.inova.org/our-services/inova-schar-cancer-institute/specialty-programs/gastrointestinal-cancer-program
NOTE: Your mother is being treated in the Institute's Gastrointestinal Cancer Program, not in the Institute's Colorectal Cancer Program.

Nutrition support at Inova Schar Cancer Institute
Each patient at Inova Schar Cancer Institute will have access to a Life with Cancer® dietitian who will help provide counseling and recommendations to help support your nutritional needs throughout your cancer journey. Our dietitians utilize a combination of evidence-based nutrition education, diet and behavioral modification. In addition, we offer genetic counseling to assist you in navigating your current risk assessment and helping you determine which genetic testing options are right for you.



Pancreatic cancer nutrition:
"Pancreatic cancer patients often find it difficult to maintain their weight. Food may not be digested properly because the pancreas is not functioning correctly. Even if patients can continue to eat and digest food normally, pancreatic cancer and other cancers release compounds into the bloodstream that break down muscle and fat, causing patients to lose weight and muscle mass as well as feel fatigued.
Dietitians work closely with your care team to help you maintain good nutrition and maximize your health. These experts can assess your needs and design a diet plan that best meets your needs, including supplementary insulin or pancreatic enzymes. Dieticians can also help you alter the consistency, fiber content or fat content of your diet to keep food palatable and prevent you from becoming malnourished."

Reference: https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-nutrition


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Hooandtrue93
Posts: 3
Joined: Tue May 11, 2021 10:28 pm

Re: Need some support

Postby Hooandtrue93 » Mon May 31, 2021 10:24 am

I see. My oncologist was very direct in that he said they are treating my mom's cancer like colon cancer since it's a pure intestinal type (pancreatobiliary, gastric, and mixed are the other phenotypes)

I was also wondering if anyone has had any experiences with Itraconazole? I know they are currently studying it and it has had some success but only in case reports (not enough data in studies).

http://citeseerx.ist.psu.edu/viewdoc/do ... 1&type=pdf

https://www.spandidos-publications.com/ol/14/3/2587

https://www.nature.com/articles/s41419- ... 0apoptosis.

https://www.medicalnewstoday.com/articl ... .%E2%80%9D

Repurposed drugs do give me a lot of hope for the future as they are already FDA approved with limited side effects. Of course there are promising anti-cancer drugs too like Devimistat and Leronlimab. Im hopeful we never have to resort to these in my mom's case but I do have to plan for the worst and be proactive since she is high risk for recurrence.
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma (Intestinal phenotype as opposed to Pancreatobiliary, Gastric, or mixed).
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months

User avatar
beach sunrise
Posts: 457
Joined: Thu Mar 05, 2020 7:14 pm

Re: Need some support

Postby beach sunrise » Mon May 31, 2021 1:09 pm

I take Itraconazole as part of my maintenance/prevention protocol. Itraconazole explained to me is that is stops 1 or 2 cancer pathways. Can't remember which ones. So far no side effects at all. I have been on it for 6 months probably.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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