Chemo not working. What to do next??? Please help!!!

After sudden stomach issues for a month and change in urine color I got blood work that showed liver enzymes thru the roof signaling a blockage
Only to discover in April Im stage 3 hospitalized then got biliary stent and duedenum stent so food and bile could pass. Lost 23lbs .. Was at first considered borderline resectable Then did chemo the folfrinox landed me back in hospital .. kicked my butt so struggled thru 3 full gemcetibine/abraxane then even tho it shrunk some the tumor board deemed me inoperable because of veinous involvement
So I requested the proton radiation therapy. I had 5 days of high dose mrgrt , mri guided at miami cancer institute sept 26-30th
So now its a wait and see until
next month how results of that are going.. being a none smoker non drinker , ate well etc Beat breast cancer from 6 years ago ( pet scan was clear in April , except for this damn pancreatic tumor
its quite devastating to wrap my head around
But please ask what other options. Be persistent. Email Dr , call dont wait for next appt unless its in a few days ask about Radiation, nano knife, trials , there really arent any immuno therapies yet I dont think
Lets all stay in touch. 🙏🏻

Thank you so much for your post.

I am heartbroken and just found out my brother who has pancreatic cancer, was told it has spread to his liver and has two small dots on his liver that are each 1 cm. They are unable to operate on him due to the tumor wrapping itself around his organs. The treatment so far has been Chemo, and radiation.

He currently is being seen by Dr. Truty Mayo/MN and the Doctors who are treating him in Ohio told him this news today and that he has 6 months to live.

I am asking my brother to wait to talk to Dr. Truty and this other Doctor told him a year ago he had 6 months to live and to please wait to hear from Mayo MN.

They do not have the reports back to tell him if the tumor is dead or not and he does not have the results of the CA-19-9 bloodwork.

I do not know how to feel and I do not understand why the Doctors in Ohio would tell him this when there is still hope.

I guess, I am asking if I am delusional?

They first found my pancreatic cancer in July when I turned really yellow.At first I was told it was resectable after chemo.Then was told it wasn't because it went into 3 lymph nodes.I have taken 4 months of pacitaxel and gemcetibine.The tumor has shrunk and no cancer is showing on my pet scan but they still wont do the surgery because it was in my lymph nodes.I found out Mayo is removing the Lymph nodes and doing the whipple procedure by laproscopy.Much less invasive.I'm going to look for that.

They first found my pancreatic cancer in July when I turned really yellow.At first I was told it was resectable after chemo.Then was told it wasn't because it went into 3 lymph nodes.I have taken 4 months of pacitaxel and gemcetibine.The tumor has shrunk and no cancer is showing on my pet scan but they still wont do the surgery because it was in my lymph nodes.I found out Mayo is removing the Lymph nodes and doing the whipple procedure by laproscopy.Much less invasive.I'm going to look for that.

Hello Pendesk8,
Is doing the whipple by laparoscopy standard or are they just starting to do some cases this way because as you said, it is less invasive.

You are not delusional. You have to have hope. I live in Ohio as well and chose the ClevClinc because they are so well known and listed with the PanCan organization. Very negative vibes after my stage IV diagnosis in May. Researched more on my own and there are very few cancer centers specific for the pancreas. CC is not one. I have since been in touch with John hopkins in MD, which is a pancreatic cancer center and even tho I receive chemo locally in my home town, my local oncologist and JH oncologist consult with one another. I will also be contacting Mayo as I have been hearing so much about Dr Truty. MY goal is surgery eventho CC said I am not a candidate. Articles by Dr. Truty describe surgery for cases like mine--I am healthy and have had no symptoms and no health issues leading to this diagnosis. Non smoker, occasional social drink with family (altho not any more since it no longer tastes the same), no history of cancer in my family. And so far folfirinox is working.

If I accepted CC's opinion, I would have given up. Don't accept one opinion--go to specific Pancreatic cancer centers for second opinion. The CA19-9 is a simple test--he should have received results right away and scans every couple of months. Keep advocating for him!

Laparascopic Whipple is performed in specialized centers - most areas have only open Whipple capability.

Do you know what centers do the less invasive Whipple ??Was just told my 74 year old husband may need that .Not sure if he would do well with that large surgery .Just starting this journey this week , misdiagnosed with bile duct ,sample where not conclusive ,need a repeat ERCP Friday ,after getting an ilius and pancreatitis.Still no good biopsy.So frustrating and scary waiting .Glad this group is here .♥️🙏