Name: Dawn Marie
Location: Minneapolis, MN
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
Tips: Trust your instincts. Find the right team of doctors to work FOR you. And most importantly, speak your truth.
Doctors I would recommend:
- John Seng (Oncologist) Minnesota Oncology
- Thomas O’Dorisio (Neuroendocrine Specialist) University of Iowa
- James Howe (Neuroendocrine Surgeon) University of Iowa
- John Lake (Hepatologist) University of Minnesota
- Srinath Chinnikotla (Transplant Surgeon) University of Minnesota
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, enodscopies 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 prior to 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 an local oncologist who did not believe in using Sando, even though preliminary data from Europe was showing 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 just 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 that never has has elevated chromagranin or pancreastatin, even though my tumor slowly grew.
In the meantime, I had 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 normal range after starting Sando. In early 2013, my specialist and my 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 exactly 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 every now and again. But, I am back to about 90% functioning, which means, I am walking about 20 miles a week and doing modified yoga.
Last week I had my first CT, five months after my surgery. I am very pleased to announce that, at this point in time, 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 next 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 in terms of “when” it comes back rather than “if” and what the next game plan will be. That will likely be PRRT. As he said, 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 in, even if it ultimately is 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. Will likely be switching to Lanreotide in the future. 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 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, my 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.