Giving hope: 5 year celebration pancreatic cancer-free

Posted by lnass @lnass, May 3, 2023

Thanks so much to Dr. Nagorney and Michelle Williamson and all the other doctors involved for me to be celebrating 5 years cancer free from pancreatic cancer! It's great to be alive!! Thanks again! ♥️

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

stageivsurvivor | @stageivsurvivor | May 28, 2023

In reply to @vtn "Your story is inspiring. I am so happy you have been able to beat this and..." + (show)

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.

gardenlady1116 | @gardenlady1116 | May 29, 2023

In reply to @vtn "Your story is inspiring. I am so happy you have been able to beat this and..." + (show)

Definitely seems to be a familial pattern. Not all cancer genes have yet been characterized. Did you see a genetics counselor? I am not sure if there is a research institution doing research on cancer genetics that is working on this issue but it just has got to be out there somewhere. My daughter is at risk for BRCA, finally agreed to genetic testing. It will be done as a virtual visit at MSKCC. This is standard screening.

stephenkogler | @stephenkogler | May 29, 2023

In reply to @stageivsurvivor "On June 12, 2012 I had my first CT scan which imaged a tumor in the..." + (show)

@stageivsurvivor

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.

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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.

stageivsurvivor | @stageivsurvivor | May 29, 2023

In reply to @stephenkogler "Thank you for sharing your story. I am five weeks out from my Whipple. I love..." + (show)

I can’t stress enough the importance of self-advocacy. It requires reading and asking questions to be able to make informed decisions and taking an active role in being part of one’s care team.

gamaryanne | @gamaryanne | May 30, 2023

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…

gardenlady1116 | @gardenlady1116 | May 30, 2023

In reply to @gamaryanne "Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in..." + (show)

Second opinion at an expert center seems like a really great idea.

gamaryanne | @gamaryanne | May 31, 2023

I am also learning that having a genetics consult more than once can be useful. Each year more genes are being added to the test. With cancers that continue to have some mystery about them, this seems useful. A friend with Lynch Syndrome gets hers done every two years by a specialists’ recommendation.

patti303 | @patti303 | May 31, 2023

In reply to @gamaryanne "Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in..." + (show)

I can so relate to your post (I had a resected PDAC w/KRAS mutation). My 20-month scan showed NED and my oncologist thought it was a waste of time to try Natera's blood test for ctDNA or even continue with my monthly blood tests (CA19-9 doesn't work for me, but I want to keep an eye on glucose and other measurements). He did order a 24th month scan, but since I've been the one requesting scans every four or five months, I'm not clear if it was because I asked for it or he recommended it.

I also like the posts recommending follow-up DNA testing. Haven't done that yet, but I'll look into it.

Can't help but wonder if it's the individual doctor or the facility's approach to pancreatic cancer patients since our stats are so discouraging? When I look around the internet, I see a tremendous amount of testing and research in the works. To my eye, there are a lot of very smart people who are passionate about finding a cure for us along with the charitable contributions to help. I see plenty of evidence that it's worth self-advocacy and being proactive. The discouraging aspect is (for many of us) we are simply left to try and navigate a system we were never prepared for.

markymarkfl | @markymarkfl | May 31, 2023

@patti303 , The Signatera ctDNA test was late detecting my PDAC recurrence, but eventually caught up with my MRI and confirmed the cancer was back.

One of my onco nurses told me the Signatera was not super-sensitive to certain solid tumors. Basically, if it detects cancer, you have cancer; if it doesn't detect cancer, you might still have cancer.

Nonetheless, I would rather do as much non-invasive testing as possible, and risk getting a false positive that requires follow-up than to remain uninformed when something *might* be there that you'll never find if you don't test.

Never let one test result be the sole basis of a treatment plan, unless it's near 100% unequivocal or you have no time for alternatives. Err on the side of caution! I had 3 different blood tests and a biopsy saying "no cancer" but an MRI saying there probably was. Follow-on bloodwork eventually caught up and confirmed the MRI was correct. The multiple false negatives gave me a false sense of "blissful ignorance" but no more so than if I had not been testing.

gamaryanne | @gamaryanne | Jun 1, 2023

@markymark911
This was so helpful. Where did your cancer reoccur?
Was it a metastasis elsewhere or in your pancreas bed where surgery was performed?

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