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 doctors on how to treat this rare but slow-growing cancer. One doctor suggested surgery, some suggested chemo-embolization, and some suggested waiting and watching the disease since a medication called octreotide controlled all of Flora's symptoms. Most surgeons felt that Flora's cancer was inoperable because there were too many metastases in the liver. Chemo-embolization seemed to be a short-term band-aid. We took the easiest path of waiting and watching.

Unfortunately, by the end of 2006, Flora symptoms were harder to control and diagnostic procedures, blood tests, and scans showed that the cancer was growing, not slowly, but rapidly.

Researching PRRT

Flora's Stanford doctor invited her to join his chemotherapy trials using new chemo- therapy agents. But we were also investigating another treatment called Peptide Receptor Radionuclide Therapy or PRRT. PRRT had been mentioned once by one doctor when Flora was first diagnosed. Flora's doctors never brought up the topic after that, but it stuck in our minds because it sounded like a very precisely targeted attack on the cancer. A targeting device and a weapon are combined in one chemical formula. The targeting device was the octreotide, the very medication which attaches to receptors on the cancer cells to turn them off to control symptoms. The weapon was radiation provided by attaching a radioactive substance to the octreotide. Placing the radioactive substance right on the cancer cells, means that the radiation would kill those cells and do little damage to normal tissue.

The PRRT was not mentioned again by any doctor we saw, but we did learn more about it from an online group for patients with neuroendocrine cancers. A few in the group had traveled to Europe for the treatment. We looked at some papers on PRRT. Studies had shown good results for many patients and occasionally complete remissions of the

disease. We learned from the online group that Bad Berka Germany had the most advanced technologies for PRRT and a group member provided information to contact Doctor Richard Baum in Bad Berka. Unlike the doctors at another PRRT center in Rotterdam, we were able to contact Dr. Baum directly about Flora's case.

In a series of telephone conversations and email exchanges we provided medical information to Doctor Baum so he could determine whether or not Flora was a good candidate for PRRT. A scan using radioactive octreotide, performed for the original diagnosis, had shown that octreotide binds well to her tumors cells. That's called "good uptake". Good uptake meant that the tumor cells would get a good dose of the radiation. Doctor Baum also needed to know that Flora's blood cell counts and kidney function were normal. They were. Flora was a good candidate.

The Decision for PRRT

In late 2006 and early 2007, I asked Flora's endocrinologist who had been following Flora's case since diagnosis and Flora's Stanford oncologist who offered the chemo trial, whether they thought PRRT was as good a choice for Flora as her other options, the chemo trial and chemo-embolization. They both said it was.

In early 2007, Flora was getting sicker. We felt a degree of urgency. Flora made the courageous decision for PRRT, so on Saturday March 24th in San Francisco, we boarded a plane to Germany. Flora was not well but she was an experienced traveler. I was not an experienced traveler but I was healthy and fit. I could carry the luggage.

Off to Bad Berka

We landed the next morning at the airport in Frankfurt Germany where we boarded a train to Weimar a few hours east of Frankfurt. At the Weimar train station, we took a taxi. The taxi passed through the small town of Bad Berka nestled among wooded hills south of Weimar and left us at the main doorway to the Zentralklinik just outside of the town.

The ZentralKlinik is a very modern hospital. As you enter the large skylit main lobby you might think you had entered a large modern hotel. The facility dates back to 1898 but new construction begun in 1991 resulted in a light, airy modern facility with gardens and shops and services for patients and visitors.

Diagnostics and Therapy at ZentralKlinik

We met with Doctor Baum that Sunday evening and checked into a guest room. The next day the staff began a series of tests on Flora in preparation for the PRRT. They performed a very advanced type of PET/CT scan. We met again with Doctor Baum on Tuesday evening. He told us that the scans showed further growth of the tumors, but that they also confirmed good uptake.

On Wednesday, Flora checked into the Radioisotope Therapy Ward where the PRRT is performed. I believe that every patient follows approximately the same schedule with tests on Monday and Tuesday, the PRRT on Wednesday, and monitoring on Thursday and Friday or until the patient is well enough to be released. Because of the use of radiation in the ward, German law that PRRT patients are isolated for a few days in the ward so that, when they leave, little radiation leaves the ward with them.

For most patients, there are no complications; measures are taken to reduce the small risk of damage to a kidney. Some decline in white and red blood cell counts is expected afterward as it is with any radiation therapy.

However, Flora was sick going into the ward. The PRRT requires that patients who use octreotide to control symptoms discontinue octreotide a day or so before the PET/CT scan and before the PRRT itself because both procedures rely on unused capacity of the tumor cells to receive octreotide. The receptors for octreotide on the cell exteriors cannot already be occupied. Discontinuing octreotide made Flora's symptoms, primarily diarrhea, worse. The diarrhea caused her potassium levels to drop. The medical staff in the ward paid extra attention to her as her potassium levels dropped close to dangerously low levels and put her on an IV to keep the levels up.

Worried Husband

I stayed in the guest room, read, and worked on my US income tax forms, but, of course, I was worried. Doctor Baum received me at his office a few times to give updates.

Fortunately, the Zentralklinik provided a pleasant environment for a worried husband. It's quiet, I took walks along trails through the wooded country side around the campus. Inside there are a few shops where I purchased food for myself and stuffed dog to take to Flora in the ward. An angelic nurse at the door of the ward relayed the gift to Flora. Telephones in the guest room and Flora's room in the ward allowed us to talk. On the phone, I could hear how weak Flora was. Flora said the dog reminded her of me, "sad and lonely". Perhaps, I had unconsciously picked the dog for its accurately portrayal of my frame of mind. Flora joked about not being able to nag me and I told her I would be happy when she could nag me again.

Going Home

Flora was released from the ward on Saturday. We met one more time with Doctor Baum, very well organized, to go over the results of the therapy, get documents to take to Flora's doctors at home, and prescribe tests to be performed at regular intervals to monitor such things as liver and kidney health and blood cell counts. We were upbeat; a scan showed excellent uptake of the radioactive octreotide.

We checked out and began the journey home by taxi to Weimar and train to Frankfurt. We stayed that night at the Steigenberger hotel near the airport because it was convenient and relatively inexpensive. The service was good. It was a good choice.

Flora's symptoms continued. She could not eat. I worried about her ability to fly home. The hotel provided internet service so I sent an email late that night to Doctor Baum who called me back quickly that same Saturday night and recommended some medications and yogurt for Flora. He also recommended we fly home as ticketed the next day. Flora was able to eat the yogurt and was able to fly the next day. The trip home was not easy but we both made it home just fine. We owe much to Doctor Baum's dedication and responsiveness.


Looking back on the trip, we know now how ill Flora was when we arrived at ZentralKlinik, how that made the trip and the treatment difficult, and also how crucial the PRRT was for her long term survival. The long hours of hard work by Doctor Baum and his staff paid off to make the trip and the treatment successful. Flora's symptoms quickly subsided after we returned home, her energy gradually returned, and she was even able to reduce her dose of octreotide. Blood tests showed reduction in tumor activity and, months latter, a scan confirmed a significant reduction in tumor size providing the final confirmation of the success of the PRRT.

Second Treatment

Between treatments patients must recover from the expected drop in red and white cell counts. For Flora, that took longer than for most. But Doctor Baum kept in touch with us and with Flora's medical status and, when Flora's cell counts had almost returned to normal, we selected a date in late August to return. At that time, Flora enjoyed much better health so the second trip was much easier for both of us. Flora did not suffer as she had the first trip. Her roommate in the ward was a cheerful and friendly native speaker of English. The day of her release, Flora was able to take a long walk with me down into the town of Bad Berka. I even enjoyed my stay in the guest room reading and watching DVDs on our laptop computer and walking the wooded trails around the campus.

Several months after the second treatment, scans showed more reduction in the tumor size. The largest tumor had shrunk to less than 1/4 of its largest size. Blood tests indicated much reduced tumor activity and Flora no longer needs the expensive octreotide medication and she is free of symptoms.

As with any cancer treatment, PRRT will yield varying results for patients with neuroendocrine tumors, but, in Flora's case, I can now write, her health is good, but without PRRT she might not even be alive. There's no cure, but this is close.

That's the story of our experience with PRRT.