Newly diagnosed with stage 4: Is this a normal progression?

Because one is staged as IV and classified as inoperable does not mean a better outcome can’t be achieved. An illustration of this is the story of my friend Camille Moses who was diagnosed at stage IV in March 2012. She sought treatment at a comprehensive cancer center with a pancreas program and advocated for going beyond standard of care, doing far in excess of 12 cycles of Folfirinox- she did 37 cycles. There is now over 16 years of data on the use of Folfirinox in patients that went beyond standard of care.

My story is different in that I had the Whipple procedure while it was not known I had micrometastatic disease to the liver. It was detected by CT seven days post surgery. I advocated for aggressive treatment with Folfirinox (46 cycles) and not only achieved N.E.D., but in the opinion of a growing number of oncologists and surgical oncologists I serve with on a GI Cancers Committee of ECOG-ACRIN, feel that I achieved cure. I have had ctDNA measurements since 2014 along with conventional imaging by CT and MRI over 11.5 years.

Here is the link to Camille’s story-
CAMILLE MOSES
https://seenamagowitzfoundation.org/camille-moses-pancreatic-cancer-survivor/

I was diagnosed with stage IV pancreatic adenocarcinoma at the tail of my pancreas with metastasis to lungs & a tumor on the adrenal gland at Mayo Clinic in Jacksonville, Florida (2.5 hours each way). The oncologist at Mayo told me to find an oncologist closer to my home. I have had all my treatments with Dr. Negrea through Anderson Cancer Center at Memorial Hospital in Savannah, GA (45 minutes each way) & Hinesville, GA (5 minutes from home).

My sister's experience at Mayo Rochester wrt to oncology - they advised her to have all oncology done there - she would have had to move to the Rochester area. She was adamant that she wanted to have oncology in her hometown - because she did not want to move her cats, and although she had friends who would have taken care of her cats in their homes, she still said no.

I felt then, and feel now, that this was a mistake - while it is obviously very difficult to move to be treated at a great center of excellence, it is perhaps the most important choice one can make.

Since the Mayo oncologist recommended treatment by a local oncologist I agreed. Dr. Negrea has a great reputation in this area. After 41 treatments with gemcitabine & Abraxane the tumors & metastasis to the lungs have dramatically improved & I am in radiologic remission. Pending my next CT and labs in December I may be able to stop chemo & continue being monitored. So much is dependent on the patient's response to treatment. I was told I should be dead in 11 months with treatment when I was diagnosed, and it has been 16 months since I was told that 🙂 Centers of excellence may sound & be great, but local treatment can also be a sound choice.