Ductal adenocarcinoma, colloid (mucinous) type

Thank you again for your advice and for sharing your personal experience! You have been through so much, but it is truly a positive sign, if you remain stable and have found treatment that works best for you.

Things can chance rapidly, that’s true. A blood test that was taken three weeks ago didn’t show any markers (CA19) yet, but this week her markers had gone up (1800 and 200, if I remember correctly).

There may be so many new treatment options developed specifically for pancreas cancer available soon as well, so let’s stay positive and hopeful!

@capricorn24 , You are very welcome, and I wish the best for your mom. I was on Folfirinox for 6 months (12 cycles) with a 2cm PDAC (pancreatic ductal adenocarcinoma) in the head of my pancreas. I remained stable (no spread or increase in tumor size) the entire time until my Whipple surgery, but Folfirinox did not kill the tumor either.

Unfortunately for me, they didn't remove enough pancreas tissue during the surgery, so the tumor came back rather quickly and spread before we started treatment for the recurrence.

I'm now on chemotherapy with "GAC" (Gemcitabine + Abraxane + Cisplatin) which also has not reduced the tumors, but again, I have been stable for the last 6 months and my cancer marker (CA19-9) numbers have gone down a lot more than they did on Folfirinox.

I have not really experienced any "cancer" side effects since having the bile duct stent inserted two years ago (removed along with gall bladder and half my pancreas during the Whipple surgery one year ago); the only thing I'm experiencing (at age 60) from the chemo is 3-4 days of fatigue after each chemo treatment, along with some peripheral neuropathy. Things can change rapidly, but there is a lot of reason to have hope!!!

For your mom's treatment, the only thing I can suggest beyond the genetic tests is to ask the doctors what their plan is for the next steps: How long will they spend waiting to see if the Folfirinox is working, how often will they run tests (and which tests -- MRI/CT, CA19-9, etc), and what is their next step if the Folfirinox is not working. I don't know if my genetic makeup (ATM mutation) is the reason I'm getting a better response to GAC than I got from Folfirinox, but it's good to do your homework, be your own advocate, and push for the doctors to always be thinking ahead rather than just driving on cruise-control.

Thank you so much for your thorough response and good thoughts! I was not aware of the genetic tests and we will definitely ask about them from the doctor. We are located in Estonia.

My mother receives Folfirinox treatment and it’s her second day. Right now she is doing well and is optimistic about the future.

Maybe the doctor just wanted to prepare her and my dad for the worse. It is actually not detected that there are lesions in the liver and the lymph-nodes, the doctor guesses it from her experiences.

My rock-hard dad has been in such a shock since the last doctor appointment, he tears up in the evenings and says there’s no hope, because this is what the doctor said. My heart hurts so much when I see him like that.

However, I personally try to concentrate on my mother’s condition rather than the diagnosis. I know the prospects aren’t great, but my mother is such a strong and healthy woman and she might surprise us all, including the experienced doctor. Maybe I am in denial, but it hurts less, if I stay hopeful!

Disclaimer: I have zero medical training...

I don't know anything about the colloid type, but 8cm is a fairly large tumor. If it started from the tail of the pancreas, it might be less likely to block the common bile duct than if it were in the head, which might be one reason to not experience jaundice.

I think the weight loss some people experience is from failure to absorb nutrients when the pancreatic enzymes are blocked or not produced in sufficient quantity to digest food properly. Other symptoms to keep an eye out for are new-onset diabetes, and changes in stool/urine color.

With that said, the doctor's prognosis might be very far from accurate. The standard answer at this point is to get into a pancreas specialist's office (*) as soon as possible for second opinions and treatment. There are people living for several years with various flavors of Stage-4 PC on the right treatments.

(*) Find the specialist at a nationally recognized center of pancreatic cancer excellence. One list here:
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
Other good resources:
https://pancan.org/
https://letswinpc.org/
https://lustgarten.org/
You'll want to get two basic types of genetic tests done as soon as possible: "Germline" (to identify DNA mutations passed down from your ancestors) and "Somatic" (to identify mutations caused by environmental factors). Both of these can be used to help select the best treatment. "Invitae" is one example of a germline test, and Guardant is one example of a somatic test.

Wishing you (and your mom) the best. Whatever you do, do it soon!