My story is about myself

This event began on 21 November 2024

The Discovery

Ercp after CT and ultrasound came back negative. I presented with about 4 days of intense systemic itching. Liver function was elevated as was bilirubin. Ercp was performed thinking it was a gallstone that was blocking things up when they found this little bugaboo in the ampula. They staged the tumor at a 1A. About a week later I had my port and chemo started the first week of December. I am 51. I lost my husband 12 years ago to a grade four glioblastoma. My kids are old enough now to understand what’s going on; they were nine and five at the time of their dad’s passing. They are now 17 and 21. The tumor board was split 50/50 on whether to do surgery first or chemo first. I opted to go chemo first in hopes of catching any of the rogue outliers before they had a chance to reassemble somewhere else. I have had three stents because of sludge. But finally in March my gallbladder decided it had had enough and I had to have its emergently removed. I was told by my surgeon that the gallbladder was about four times bigger than normal, 60 cc’s of purulent fluid, and she lost counts at the number of gallstones that came out. 3 weeks later I resumed round six of fulfironox. About 2 days after that I started developing a pain which I thought was an adhesion but turned out to be two abscesses where the gallbladder used to be. I then was sent to international radiology and had two drains placed. I am scheduled for a Whipple on May 19th. And then I will resume chemo, most likely in June. The thing about my tumor is that it has never shown up on cat scan. I have never had any sort of stomach or pancreatic pain. My tumor markers have always been normal. This all presented as gallbladder. I am a bit of an enigma because there’s so much information out there on stages 3 and 4 but not a whole lot on stage one because it’s just not seen all that often so the tumor board really doesn’t know what to do with me. My team feels that the outcome is favorable especially if it turns out to be an ampillary tumor versus a pancreatic. I guess I’ll know more after May 19th.

The Impact of Time

So many people have told me that they are thankful I’ve listened to my body and I knew things weren’t as they should be. It helps that I have 23 years of medical experience as a respiratory therapist. Even though I got out of the profession in 2019 I still know a little about a lot. People need to be an advocate for themselves when the medical community brushes them off. But because my tumor is not visible on CT and that my tumor markers have been normal, my team is also mildly concerned that the tumor is growing and they can’t see it. I might have that rare tumor that produces markers that they don’t look for. We don’t know. But I am clinging to the possibility, albeit low, that they are able to reset everything without having to take a whole lot of extra tissue and that the tumor is dead and I won’t need chemo after this.

My story is about myself

This event began on 16 September 2022

The Discovery

I had some tummy issues for about 9 months, but nothing so severe that would alarm me… it was a stressful time in my life and I chalked it off to that. Looking back, I guess there were some changes in my bowels, too. What brought me to the hospital was uncontrollable itching for 3 day.

My biliary levels were very high, in the thousands, as were my liver levels. An ER doctor had just come from a conference on pancreatic cancer and was alerted to the symptom of itching. A CT scan and an MRI showed a tumor compressing the biliary tract. Within three days , and ECRP and stent was placed in The gallbladder. Diagnosis: stage 1B borderline resectable Pancreatic Adenocarcinoma. I was 54 years old.
A week after that a port placed.

Treatment began the first week of October. 6 months of brutal chemotherapy followed by 24 sessions of radiation prepared me for a Whipple procedure on May 18, 2023. They got it all! I was lucky.

I still go for blood work every 8 weeks and scans every 4-6 months. As of today, April 30, 2025, no re occurrence.

The Impact of Time

Early detection was key to my outcome… a good team of oncologists, nurses and surgeons fought alongside me, as did my family and friends. We need to focus more on uncommon symptoms and bringing awareness to populations more prone to this disease. I had no family history, no genetic markers… screening is essential to survival rates! Funding is needed… my outlook has changed drastically. I thought it was a death sentence, but it can be beat if discovered early. Aggressive treatment was also beneficial….

Just before my diagnosis, I found my birth mother. I was so happy to be in her life because she never had any children after me. I thought I was giving her a gift, but she was my gift. She held my hand through many treatments, surgery, and recovery when my parents couldn’t because of their aging and failing health. God placed an angel in my life when I needed her most.

My Story is about Hélade Izabela

 

This event took place from 3/31/2021 to 11/21/2024

 

The Discovery

In January 2021, I had an attack of renal colic, an old acquaintance of mine, which alerted me to see a specialist again, so as not to have to spend days in the hospital, as we were still in the midst of the COVID-19 pandemic.
And in a finding, in a CT scan, the diagnosis of pancreatic cancer came.

As I trained and ate well, I would never think that weight loss would indicate any health issues. And I also stopped feeling hungry, another symptom that wouldn’t lead me to seek medical help, I didn’t have pain, or any other symptom, and I only discovered it due to a renal colic attack.
I underwent surgery in May 2021, a body-to-tail pancreatectomy, and after 2 months I needed radiotherapy, due to compromised margins after surgery. There were 30 sessions.

This is My Story

Many fears, anxieties, it was like seeing life come to a standstill and in an instant not knowing how or where to go. And the road is long, since the day I received the diagnosis 310 days passed, 10 months and 4 days of a real rollercoaster of feelings and a huge medical marathon I became a true onco athlete olimpica. And all stages are important, difficult and transformative, surgery, treatment, follow-up. Anxiety when exams, appointments, always deal with countless feelings. And getting back to life after all this avalanche is perhaps one of the biggest challenges. We will never be the same people as before of the diagnosis, this is a fact. But life is still there, the same life, and in front of that life a new being trying to find itself again and rebuild itself. Talking about this is important, to make the process less lonely, to understand this “new world”, to understand and find oneself and also to raise people’s awareness. Having the vision of the disease told by patients is extremely important, it validates our processes and feelings. And it helps to break down many taboos, myths and fears. Cancer is scary, it’s no joke, but it’s not the end, nor a death sentence, we are the greatest generation of survivors, and if every time a person shares their trajectory, serve as a warning so that a person can have an early diagnosis, we will be an even bigger group! Talking about prevention saves lives, because those who seek yes, yes, but whoever finds cures!

The Impact of Time

That’s why I always say, pay close attention to any unusual signs that appear on your body, maybe if it weren’t for the kidney stones, I wouldn’t be here today, telling my story, right? When I was diagnosed with pancreatic cancer I went through all kinds of “unnecessary things to say to a cancer patient”, ranging from the classic ones to the more specific ones, which involve the prognosis of pancreatic cancer and its stigma of non-survival. Even once doing tests, the “professional” who did the collection asked me why I was doing so many tests, since I visited the laboratory almost daily, I told her and talked about the anguish of not finding anyone who could talk about what was going on. going through, someone who had been through it, and could share their experience. She promptly replied that it was obvious, when it’s pancreatic cancer no one survives. Unfortunately, when we talk about pancreatic cancer we still hear many people wrongly say that there is no chance of surviving the diagnosis, due to the statistics and high mortality rates, thus carrying the stigma of “non-survival”. But you can’t just consider NUMBERS when talking about LIVES! And today, 3 years after the end of my treatment, I have already met several survivors living their lives to the fullest. We EXIST

My Story is about Giovanni Lo Re

This is My Story

In memory of a dear friend-patient suffering from inoperable adenocarcinoma of the head of the pancreas.
After local and systemic conservative treatment, he had the strength and determination to maintain the stationarity of the disease through a slow and constant path.
Physical exercise positively influenced the stability of the disease, present but dormant, for a very long period of time, although this positive outcome is rare for a disease as serious as pancreatic cancer.
This very important concept was explored in depth during the presentation of his first book“Se cammino, vivo. Se di cancro si muore, pur si vive” during Pordenonelegge on sept 2018 . A first step that began a scientific study that led to the publication of an article “Physical exercise in locally advanced pancreatic adenocarcinoma: “If I walk, I live. Although one can die of cancer, now I am living” (J Cancer Metastasis Treat 2019;5:81).
He traveled 27,000 km and was very active, participating in meetings, including the World Pancreatic Cancer Day to Verona on November 2020. He has contributed to talking more and more about this disease with few effective treatments. His unique experience allowed him to confirm the importance of physical exercise on immune surveillance, which made it possible to obtain the stability of the disease for about 10 years of natural history.
Proof of this is the last book he wrote before he left us

My Story is about My husband, Alex Lopez

 

This event took place from 07/01/2018 to 09/20/2019

 

The Discovery

It was a very long and painful process for my husband before we got the final diagnosis that it was Pancreatic Cancer in January 2019.

Being a very fit man (training for the Hawaiian Triathlon), it was very odd and out of character that Alex started to suffer from severe stomach pains and indigestion. Medical investigations were carried out including, Endoscopies, Colonoscopies, Scans and MRI’s which were inconclusive, only showing some inflammation in the pancreas though nothing showing the cause.

Alex continued to get worse and on the 26th of November was admitted into hospital with pain that had become unbearable.

It was then discovered the liver was infected, and his bloods were showing markers for cancer and tumors.

Deterioration was swift and still no definitive result where the cancer was, though the Pancreas was where most likely.

Alex underwent major Whipple surgery in January 2019 where our worst fears were realized. The Metastasized Pancreatic Cancer was found in the lymph nodes so was automatically diagnosed as stage 4.

This is My Story

The next 8 months were a roller coaster where Alex endured months in hospital with multiple stays in Intensive Care and chemotherapy treatments. There was a short reprieve during this time, and Alex was able to live a relatively normal life during this time.

Sadly, it was only brief, and he lost his fight on the 20th of September 2019, after summoning enormous strength to be with me on my birthday on the 17th.

The Impact of Time

TIME IS IMPORTANT!

An experience such as what Alex went through makes you realise that time is very precious and every moment is a gift and should be treasured.

Time is equally important early in the process to diagnose and begin treating (if appropriate) the cancer as soon as possible.

We need more research into early detection so we can fight this insidious disease before it has a chance to take hold.