Giving hope: 5 year celebration pancreatic cancer-free

Your story is inspiring. I am so happy you have been able to beat this and be cured. I am so new to this that I am unsure what to believe. I have seen conflicting reports that a cure is possible but other news that it is never cured.
Where did you go to enroll in the clinical trial and is this chemo florfirinox approved? Was the other chemo 5FU-Leucororin for the breast cancer BRCA gene?
I am still waiting for the results of genetic tests. I did 23 and me a few years ago and it indicated I did not have the BRCA mutations. My aunt had the BRCA mutation and she had breast cancer. Her daughter (my first cousin) did not have the BRCA mutation but she developed breast cancer a hormone type.
Where did you seek treatment and have your Whipple?
In 3 weeks I will have the Gallium Dotatate scan. I will know the staging then.
If this the scan shows no metastasis I still am thinking of having a Whipple but I think my NET specialist will not agree. I am afraid of the spreading of this to my liver and if I wait they may not catch it in time.

Your story is inspiring. I am so happy you have been able to beat this and be cured. I am so new to this that I am unsure what to believe. I have seen conflicting reports that a cure is possible but other news that it is never cured.
Where did you go to enroll in the clinical trial and is this chemo florfirinox approved? Was the other chemo 5FU-Leucororin for the breast cancer BRCA gene?
I am still waiting for the results of genetic tests. I did 23 and me a few years ago and it indicated I did not have the BRCA mutations. My aunt had the BRCA mutation and she had breast cancer. Her daughter (my first cousin) did not have the BRCA mutation but she developed breast cancer a hormone type.
Where did you seek treatment and have your Whipple?
In 3 weeks I will have the Gallium Dotatate scan. I will know the staging then.
If this the scan shows no metastasis I still am thinking of having a Whipple but I think my NET specialist will not agree. I am afraid of the spreading of this to my liver and if I wait they may not catch it in time.

On June 12, 2012 I had my first CT scan which imaged a tumor in the head of my pancreas. On 6/15-a Friday, I met the surgeon who informed me I was eligible for the Whipple and wanted to perform it first thing the next morning which was Saturday. He said I had a very aggressive tumor and needed to have surgery sooner than later. I asked to do it on Monday (6/18/2012) morning and when opened on the OR table, it was found the tumor was in contact with the portal vein and invaded the vascular wall. Surgery continued requiring portal vein resection.

One week later a CT was done to check if I had an intestinal blockage. So it was 13 days after the initial scan. No blockage but the radiologist noted several areas in my liver that resembled metastatic disease. A liver biopsy confirmed it. The metastasis did not happen in 13 days. It was already there as micrometastatic disease unable to be detected because a CT and MRI have a sensitivity level of a certain size. If below that level of detection sensitivity, then it won’t show on imaging. That/includes PET scans as well. So I was already stage IV when I was first seen by a specialist and had the Whipple. Had it been large enough to be detected, the Whipple likely would not have been performed.

The Whipple went smoothly. It took nine hours. Portal vein resection was mentioned in my surgical report as challenging. The report also noted 11/22 lymph nodes positive, poorly differentiated cellular dysplasia and high grade. Coming from a profession as a researcher in clinical cancer, immunology and stem cell research, I understood the definition of NED (No Evidence of Disease) and MRD (minimal residual disease), I knew it was going to take more than 12 cycles of Folfirinox to not only achieve NED, but to eliminate MRD as well. Otherwise the likelihood of MRD remaining would likely lead to reoccurrence at some point.

I advocated for aggressive chemo. There was no set number of cycles. It would be as much as my body could tolerate or until no more shrinkage was observed-whichever came first. I did Folfirinox and 5-FU/Leucovorin in alternating groups of six over 24 months. I had a total of 24 cycles of full dose Folfirinox of the original unmodified, 20% higher concentration and 22 cycles of 5-FU for a combined total of 46. It was done this way to hopefully lessen the impact of getting permanent neuropathy. It ended up working.

I achieved NED at the end of the 24 months. Besides frequent surveillance, I get ctDNA testing every 3 months. It was part of a clinical trial I was on targeting a BRCA gene mutation using a PARP inhibitor. BRCA mutations results in an increased lifetime risk of developing a new primary cancer. So even if all traces of metastatic disease are eliminated, I still had an increased risk.

I have been informed by a number of pancreatic cancer oncologists and surgical oncologists I am cured. Scans and ctDNA measurements have always been negative. They also added that there is increasing reports of patients achieving cure with Folfirinox. But there is possibly another component in patients that achieve long-term survival that the NCI refers to as exceptional responders. Often it is observed in this cohort that NK-T (Natural killer) cells are able to deeply penetrate solid tumors protected by a dense fibroblast-stromal layer. Why this happens is not yet elucidated but is being investigated. It is assumed I had this effect. When I was asked if I would provide a biopsy specimen of what was left of my tumors (likely car tissue), what was then barely visible was too small to biopsy. Today I have no evidence of tumors. So it will remain a mystery if the NKT cells did indeed penetrate the tumors to help destroy them along with the aggressive chemo.

June 18th will be the 11th anniversary of the Whipple. I am alive, well and thriving and very active as a patient advocate and mentor. I’m glad I advocated for the aggressive chemo and that I was able to tolerate it well. I feel,it played a significant role in becoming cured of being stage IV.

Thank you for sharing your story. I am five weeks out from my Whipple. I love the methodical approach that you took to your treatment. This gives us all hope.

Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in my life have disappeared. I do have follow up appointments but I somewhat feel I am in a “wait and see” loop.
So I am trying to arrange consults with Mayo, MSK and John’s Hopkins. So far have appt at JH. I have a great surgeon but I need second opinions on how to be proactive now. My oncologist feels so nothing right now but surveillance. Just not aure I am comfortable with this…

Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in my life have disappeared. I do have follow up appointments but I somewhat feel I am in a “wait and see” loop.
So I am trying to arrange consults with Mayo, MSK and John’s Hopkins. So far have appt at JH. I have a great surgeon but I need second opinions on how to be proactive now. My oncologist feels so nothing right now but surveillance. Just not aure I am comfortable with this…