Stage IV

eunicec16 Member Posts: 1 Member
edited July 2023 in Pancreatic Cancer #1

Hi there. I am new to this site and my 42 year old brother was diagnosed with stage iv pancan with lymph node involvement and there are spots in his lung that are far too small to even get a adequate tissue biopsy from. He starts his 3rd treatment of Folfirinox Wednesday. So far he has been tolerating pretty well. Any insight on this? And his chemo treatment? Looking for positive stories to help get us through this difficult time. I have heard of people being NED after chemo alone. Also NED with chemo and cannabis. I have also heard of a few surgeons in the USA that will do surgery once mets are shrunk down or gone. Does anyone have any experience with this? Also he had his blood drawn for genetic testing but we still do not have this back. Also asked for a nutrition consult. Still have not had that. Also...clinical trials....are they worth it or how difficult are they to get into? Any help would be so greatly appreciated. Thank you in advance. I know I have asked a lot of questions..


  • Daffodil65
    Daffodil65 Member Posts: 19 Member


    My husband is stage iii and went through 6 months of Folfirinox for his first chemo treatment. He experienced neuropathy in his hands and feet, brain fog, hair loss, and fatigue. He needed the anti-nausea meds during and after treatments and came home with a pump for 2 days after his treatment appt. The side effects accumulate over time but he started feeling better a few days after his pump was removed for each treatment.

    My husband is still going through treatments. After his first treatment with folfirinox, he had about 2 months off and then had nano knife ablation surgery (since his tumor was locally advanced this was the best option, xince your brother's cancer has spread, they probably would not be able to use this treatment), then he had radiation treatments and had about 6 months with the tumor remaining stable (reduced in size but not small enough to remove). Then his CA 19 levels started to climb again and the tumor started to grow. He started chemo treatments with Gemzar, but his liver doesn't appear to be handling that treatment well so we are waiting for test results and an appt with the oncologist this week.

    Genetic testing is a good thing to have done to see if there are any potential immunotherapy treatments for your brother's cancer. It can take several weeks to hear back about the results.

    Nutrition consultation is also a good thing to do, especially if he is having trouble finding foods that he can digest. Is he taking enzymes? My husband's tumor has shut off the pancreatic duct so he has to have enzymes to digest his food. If your bother doesn't need the enzymes he probably isn't having as many digestive issues. However, the chemo can cause diarrhea and the anti-nausea meds can cause constipation. Try Immodium for diarrhea and a magnesium supplement for constipation. My husband was advised to eat lean proteins, cooked veggies (raw can be hard to digest), fruits, and whole grains... try to reduce sugar and processed foods. Overall, he should eat foods that are nutrient-dense but if he is craving something, it's okay to eat those comfort foods, too.

    As far as clinical trials, they are usually attempted after the standard of care treatment options have been exhausted. Our oncologist told us that the clinical trials have not been through as much testing as the chemo treatments and some immunotherapy treatments, so they typically want the patient to go through the treatment with the most reliable outcomes before trying something experimental. The Folfirinox may be the best option for him right now unless the genetic testing shows that an immunotherapy treatment would be better.

    I hope that this is helpful and I hope for the best for your brother.