Giving hope: 5 year celebration pancreatic cancer-free

The Whipple procedure since 1935 was considered the only method of cure and that was if one had a very early stage. There are some stage IV survivors that were cured using chemo drugs designed for colon cancer. They are around but not many of them. The original version of Folfirinox was FDA approved for pancreatic cancer in 2011. The modified version was FDA approved in 2018. There is now sufficient data since the original version of Folfirinox began being used in clinical trials prior to 2011 of long-term survivors who were stage III and stage IV.

5-Fluorouricil (5-FU) is a component of Folfirinox. It was developed to treat colon cancer and then was found to have benefit in pancreatic cancer. As I mentioned previously, I got Folfirinox for six cycles and then the irinotecan and oxaliplatin were removed so I was just getting the 5-FU component with Leucovorin as resting cycles to reduce the chance of permanent neuropathy. My tumors continued to respond significantly to the 5-FU alone.

The best experienced medical centers for treating pancreatic cancer are the ones that are NCI designated centers of excellence in cancer treatment with a Hepatobiliary department or even better, one with a pancreas program. I went into NYC and chose Weill Cornell. The Hepatobiliary program was headed by a world renowned surgeon who at that point in his career had done over 1500 Whipples and was part of a group of three that pioneered a liver transplantation technique. He was a very skilled surgeon with vascular surgery skills that was at the right place and the right time when portal vein involvement was discovered while in surgery.

During standard of care treatment with Folfirinox I had genetic testing done. It was not standard practice in 2012 to do on pancreatic cancer patients then. It found a BRCA mutation and the geneticist suggested I search for a PARP-1 inhibitor trial. It took 14 months and I happened to find it before it was publicly announced. That’s an interesting story for another time. I was the first patient in the USA to enroll in the trial and the longest pancreatic cancer patient in the world on that drug. The trial was at Abramson Cancer Center of the University of Pennsylvania. I continue to go there for long-term following being on that experimental drug.

Regarding multiple opinons-absolutely. Contact the Pancreatic Cancer Action Network at 877.272.6226, M-F, 7:00am-5:00pm PT. They can provide a list of skilled surgeons and facilities by State and region. Most surgeons would not have continued the Whipple when vascular involvement was found. Two of the three surgeons on the surgical team were also transplant specialists with vascular surgery skills in addition to doing the Whipple. So they were equipped to handle the challenges. Surgeons skills vary and why you Ned to find one with the expertise that can do the surgery.

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.

I'm tagging @stageivsurvivor so they see your questions @vtn.

You were stage 4 when you were diagnosed? And you had a Whipple and are fine after 11years?
Please tell me more about your journey.

Hi!
My FNP was really on my side and kept on until she found my lipase levels were super high and a CT scan confirmed I had pancreatic cancer. I was at Mayo within 2 weeks and they had me go back home and do chemotherapy until it had shrunk enough to do surgery, which I had at mayo May 3, 2018. I had a distal pancrectomy and a splenectomy followed by more chemotherapy and every scan since has been great!! Mine was caught very early, hence listening to your body!! Good luck!!

@lnass, congratulations. I hope you don't mind, but I augmented the title of this discussion to be "Giving hope: 5 year celebration pancreatic cancer-free". As detection and treatment options continue to improve, there are many more stories like yours for pancreatic cancer. I think this discussion will give others hope.

Like @lvtexas, I'd like to hear more of your story. How was the cancer found and where? What treatments did you have?

Congratulations! Whippee! I hope to join your club one day!
Can you share the details of your journey? We may learn from it.

Thanks for sharing your story.

Patient’s choice on where one starts to count their survival. Some consider the day they received the diagnosis. Others consider the day treatment began. My diagnosis and the day I had my Whipple was less than three days so I mark my anniversary of surviving when my treatment began which was Whipple surgery. It will be 11 years in June.