Member Profile: Dawn Marie

2016-04-09 16.12.45Name: Dawn Marie
Location: Minneapolis, MN
Email: {This email is obscured. Your must have javascript enabled to see it}
Facebook: facebook.com/dawnmariepeterson
TikTok: soulsaw
PRRT Blog: northwoodsnets.org/category/patient-profiles/prrt-me/
GoFundMe page: Dawn Marie’s NET Cancer Fund
Date of Diagnosis: October 23, 2007
Diagnosis: Islet Cell Tumor, Pancreatic Neuroendocrine Carcinoma, PNET
Tips: Trust your instincts. Find the right team of doctors to work FOR you. And most importantly, speak your truth.

Doctors I would recommend:

My Story: 

In 2007, I became very ill. Anemia. Huge isolated gastric varices, normal liver biopsies, all my other bloodwork was normal, short of the anemia. I had CTs, ultrasounds, colonoscopies, and endoscopies, and nothing could be found.

After months of trying to figure out what was wrong with me, I was diagnosed with a neuroendocrine tumor on the tail of my pancreas via EUS (endoscopic ultrasound.) I never had obvious symptoms, but a rotating cast of digestive disorders, random asthma attacks, skin rashes, and so on for no less than 20 years before my diagnosis. They would come and go and change over time to something else, so I just figured…I was a delicate flower.

I was fortunate enough to be able to have my primary removed in late 2007. I had about 50% of my pancreas removed, my spleen, which was damaged from the tumor blocking the splenic vein and 19 regional lymph nodes. Of the 19 nodes that were removed, 15 of them were positive. My ki-67 was listed at 2% – 5%. My surgery was very difficult, and I had complications that landed me in the hospital for 15 days and on TPN at home with health nurses visiting twice a week for labs for another month.

Initially, I worked with a local oncologist who did not believe in using Sando, even though preliminary data from Europe showed that it helped reduce tumor growth. Nine months after my initial surgery, new tumors were seen in my liver via CT. I was offered chemoembolization by one local team and a liver resection from one of the national specialists. Honestly, it was less than two years from my initial surgery, and I couldn’t bear to go through it again quite yet.

My tumor was classified as non-functioning, so I never had any real symptoms, and I am one of those people who never had elevated chromogranin or pancreastatin, even though my tumor slowly grew.

In the meantime, I started working with a new oncologist who put me on Sando. I started at 20mg, then bumped to 30mg, then to 40mg, when my tumors continued to progress over the next three years. My serotonin became very mildly elevated over the years, never over the mid-200 range. The only thing that has ever shown gross elevation was ghrelin, which fell back into the normal range after starting Sando. In early 2013, my specialist and local oncologist wanted me to try Afinitor.

My local oncologist knew that I was very sensitive to medication, and he started me at 5mg rather than the typical 10mg. I took precisely 17 pills before they removed me from the medication. My entire mouth was filled with sores, tongue, gums, cheeks, top of my mouth and throat. More frightening was that I started getting extreme swelling on my face, particularly around my eyes and lips. It was graded at 3 oral mucositis. Frankly, it was awful.

It took about six weeks for the mouth sores to completely heal. Meanwhile, if that wasn’t enough, at this same time, my gallbladder decided to kick the bucket, and it needed to come out, pronto. Since I was going to have to have surgery, I talked to a superb liver surgeon about doing RFA along with my cholecystectomy. My specialist was 100% behind my decision.

The liver surgeon recommended a liver resection to remove segment seven of my liver, along with my gallbladder. I knew that it was time I sucked it up and did surgery. I did that in May of 2013. The surgery was pretty uneventful. My sister said I looked better after a liver resection than I did after taking Afinitor. I did struggle with liver pain and referral pain for almost 7 weeks and still get zings now and again. But I am back to about 90% functioning, meaning I walk about 20 miles a week and do modified yoga.

Last week I had my first CT, five months after my surgery. I am happy to announce that, at this point, I am NED (no evidence of disease). I have no false allusions that I am cured, but we did make a significant dent in my disease. I remain on 40mg of Sando and will monitor with my specialist and oncologist. My subsequent CT will be in another four months since it’s still relatively early post-surgery.

When talking to my specialist, who was *very* excited with my news, we spoke more about “when” it comes back rather than “if” and what the next game plan will be. That will likely be PRRT. He said that with “the pancreatic NETs, we like to treat them as early on as we can.”

I rolled the dice for some time, and I was lucky this time. I just wanted to share my good news. It’s a nice place to be, even if it is ultimately just temporary. I will continue to update my story as it continues.

Update: February 2014

My current CT scans are still clear, showing no signs of metastatic disease. I remain on 40 mg of Sandostatin every four weeks. I have no symptoms currently.

Update: October 2014

My latest scans are beginning to show new growth, as anticipated. I am doing very well, on a different dosage of Sandostatin due to muscle cramping. I will likely be switching to Lanreotide in the future. I am also investigating doing a trial of PRRT (peptide radionuclide receptor therapy) at the University of Iowa.

Update: September 2015

My July scans came back with a significant amount of tumor growth, so I went under the knife again. This time, they removed two larger tumors in my liver via enucleation, one tumor that one on a lymph node behind my pancreas, and they ablated 17 smaller tumors in my liver. Pathology at the time of the surgery indicates that I am an excellent candidate for PRRT since my tumors had 100% uptake in the SST2A test that determines suitability for PRRT. Lanreotide was used for four months and had to be stopped. I had terrible welts and itching reactions to it. Back to Sando!

Update: May 2016

I will be heading to Basel to undergo PRRT treatment. Despite my tumors being relatively active and a long-term patient in Iowa, I am not considered “high priority” enough for the trial. I will be blogging my experience on this site.

Update: August 2017

In my nine-month post-PRRT in Switzerland, the tumor burden in my liver went from 5% to 30%. Iowa suggested that I do either Sirspheres or Cap-Tem chemotherapy regimen. My team in Minnesota has suggested getting on the liver transplant list since my disease is entirely in my liver.

Update: June 2018

After 8 months of both Cap-Tem and Sirspheres treatment, I received a liver transplant.

Update: May & July 2021

I traveled to Bad Berka, Germany, for alpha PRRT with AC225 (Actinium). My first round was with Y90, and the second was with actinium. It worked on my bone metastases but not on my lymph nodes that should have been removed at transplant. That’s a whole other story.

Update 2022

I enrolled in a 7-semester program to get my Masters in Nursing!

Update 2023

The lymph nodes mentioned in my previous update suddenly decided to grow quickly. My ki-67 shot up to 57A%. So, I did Cap-Tem from February to May. It didn’t work. In fact, the tumors got even more significant, So I was switched to FOLFOX, which is a chemo combination of fluorouracil, leucovorin, and oxaliplatin. I was able to undergo 10 rounds when neuropathy hit my hands, feet, and legs hard. We removed the oxaliplatin for the last two rounds, called 5-FU. This brought me into early 2024. I am now not on treatment as I will be undergoing exploratory laparotomy with the University of Iowa neuroendocrine surgeons on March 1, 2024.

Update 2024

My fifth semester of nursing school just started, and in March, I am undergoing surgery. You can follow me on TikTok to hear more about my journey.