Patient Stories

PRRT Experience — The Patient's Perspective

A number of patients who have had PRRT have asked to share their story about their experience. The articles presented here are in the words of people who have undergone one or more PRRT. They are meant to share the feelings and perspectives about this treatment at various clinics around the world with those who may be considering PRRT for themselves. Please as with all advice medical or travel, confirm the information with your doctor, the clinic or travel provider.  If you would like to share your story with others on this website you can contact us here.

PRRT Treatment at Bad Berka Experience
February 2016 through November 2016

First PRRT Round – February 2016
Second PRRT Round – May 2016
Third PRRT Round – August 2016
Fourth PRRT Round – November 2016

For background information only, I was diagnosed with neuroendocrine cancer (Gastrinoma) with extensive liver metastasis at the age of 44. Like most NET patients, the diagnosis was made late and other than some occasional heart burn symptoms, I was otherwise asymptomatic and

- Polly Newman - 2015

I’d rather Eat my way through Italy, Pray at an ashram in India and experience the Love of Bali (my favorite place in the world) but alas, at this point in my life, it’s all about flushing, pooping and PRRT. I write this while waiting in Heathrow’s Terminal 5 for my connection back home to Austin after completing my second and final PRRT treatment in Basel, Switzerland. Here’s a rundown of my experiences and thoughts. I am a patient and learned

WAR AND SILENT WAR By Ned Soseman - an update of our Solider Story

Imagine you’re 41 years old, driving along I-44 when your cell phone rings. The caller is your family doctor who says you have been diagnosed with cancer and have only one to three months to live. Shock, despair, anger, frustration, hopelessness; you’re instantly overwhelmed with the worst.

What do you do when the next call is from hospice? If you are Staff Sergeant Daniel Barber of Missouri National Guard D Company 1-106th

PRRT at Erasmus Medical Center, Rotterdam, The Netherlands (aka Holland), 2013

Dec2013

You and your oncologist have determined that PRRT (Lutetium 177) treatments are the best option for your neuroendocrine cancer at this time, at Erasmus MC in Rotterdam. Your doctor has provided the nuclear physicians at Erasmus with your pertinent medical records, scans, and test results and you’ve been approved for treatments. You’ll provide two 24 hour urine specimens, and be tested for MRSA, and you’ll

My name is Susan, and I was diagnosed with carcinoid in February 2002. Following nearly a decade of treatment in the U.S., I decided to seek PRRT treatment with Dr. Baum in 2011. With the help of Dr. Woltering in Kenner, LA, I was accepted into Dr. Baum's PRRT protocol and scheduled for treatment in December 2011.

My husband Bill and I made the trip the week before Christmas. Because of a variety of challenges we encountered, we felt it would be helpful to compile a list of do's and don'ts for

A Patient Story – Roger J.

 

I watched the tear rise in my wife's eyes as the door to the double foyer closed and see watched me walk into the PRRT radiation ward. She wanted to spend the morning in my room prior to the testing of my body began. We had traveled two days to arrive in an unfamiliar small town in eastern Germany. Most of the town folk spoke no English and looked at us with an odd stare as it was obvious we were visitors in their historic city. The previous evening we had

Road to Basel, A New Experience for me

By Terry Y.  Updated January 2013

Attention: I have been advised of changes in the University Hospital Basel Nuclear Medicine staff, new treatment charges effective in 2013, and a few other important items to be aware of in planning for PRRT in Basel, Switzerland. Please note these changes as they have been updated since my visits and this story were written in 2009. These changes are summarized here and reflected in the document below.

I am Daniel B., a 43 year old male, married and with one son named Luke, who is 7 years old. We live in Missouri. I am a member of the Missouri Army National Guard. I have been deployed three times.

1991 Desert Shield/Desert Storm (6 months Saudi Arabia,Iraq,Kuwait)

2003-2005 OIF (15 months Ballad Iraq, Kuwait)

2008-2009 OIF (12 months Biap, Tallil, AL Kut, Iraq, Kuwait)

My job in the military is to work on UH-60 Blackhawk helicopters. I am a staff sergeant in charge of a maintenance

It was in September of 2010 when I finally decided to have PRRT. It had been 5 years, almost to the day, since my original diagnosis with Stage 4 NeuroEndocrine Cancer, A.K.A. Carcinoid. I knew quite a bit about the disease when diagnosed because my Father, Thomas, had recently lost his 11 year battle with Neruoendocrine Cancer only a few years earlier at age 73. At 41 years old, this was the last thing I expected.

Early on in my post diagnosis research, I learned about PRRT. My doctors at

My wife, Flora, and I traveled twice to Germany in 2007 for treatment under Professor Dr. Richard Baum at the Dept. of Nuclear Medicine, Zentralklinik in Bad Berka, Germany. I'm writing this narrative of our experience because I think other patients in the US and Canada with neuroendocrine cancers might want to consider the same treatment, which is not available in North America.

 

Diagnosis and Prior Treatment

Flora was diagnosed with VIPoma in November 2004. We sought opinions from several