We spent about 10 days in Scotland ending last week. Our son, his wife and son live in Cellardyke near St. Andrews. We take every chance we can to visit them. We love to see them especially the five and a half year old grandson.
While there, we took the wonderful train system to Stirling. Stirling is an ancient town with a castle that dates to the the 14th century. It was perhaps the most used of the royal residences during the reign of the Scottish Kings. The Scots have done a very good job of restoring the interiors of several of the castle rooms to look like they did during the King’s residence. The battles of Stirling Bridge and of Bannockburn pictured in the movie “Braveheart” was fought very nearby.
All in all, it was a very good trip. I regret that I have not pictures of family or castles but my phone with it’s camera died on the first day of the trip.
Health and Missed Opportunity
I have written in Another NETspot GA68 Scan – Next PRRT that I am “on the list” for a treatment called PRRT. While we were in Scotland, an opening in the list occurred for today Nov. 9. The oncology office called and left messages but I was in Scotland and my phone was broken. I finally got the message when it was too late to begin the treatments this week. This was a bit disappointing but could not be helped. I am still on the list for early next year.
Last Friday, just two days after our return, I got my monthly Sandostatin injection for NET Cancer. Since then, I have been experiencing some of the Carcinoid Syndrome symptoms that don’t usually bother me. I mentioned this to my oncologist and he told me that sometimes the injection is done badly or the batch of medication is bad.
The term “Scanxiety” is often used among cancer patients.
Our disease is often tracked by a confusing array of scans. I personally have had CT scans, ultrasound, MRI scans (not anymore, I now have a pacemaker), octreoscans, a bone scan, and PET/CT Netspot scans (see About the GA-68 Scan).
“Scanxiety” obviously refers to the anxiety, worry about what the scan will reveal. I try to remain optimistic but when you know the disease is incurable, optimism means no progression and for the test eight days ago, I actually suspected that there is some progression (disease is worsening).
I met with Dr. Liu today and, sadly, I was right. However, the report says “mild progression” and Dr. Liu says “tiny progression”. Here are some pictures but be advised that only an expert who has reviewed hundreds of these should try to interpret them:
These scans have several ways of pinpointing tumors. The black and white below can be turned 360 degrees so you can see tumors that might be hidden by organs. The color ones really show up brightly as you scan through the body from head to knees.
The red marks show new tumors, behind the left eye and on the abdominal wall, Some others may have grown a little. The larger black spaces are organs, not tumors.
The tumor behind the right eye was found last year. The tumor just a little lower behind the left eye is new.
So… What now?
Dr. Liu has put me on the list for a treatment just FDA approved in January 2018 although it has been used in Europe for maybe twenty years. The treatment is called Peptide Receptor Radionuclide Therapy (PRRT). I will be able to get it sometime after the new year. A person is eligible for PRRT if they:
Have metastatic/progressive NETs (see above)
Netspot (GA68) shows positive images of the NETs (see above)
bloods tests show that the patient can handle the radiation
I check all those boxes.
What does PRRT do?
Just like the GA-68 scan, PRRT relies on neuroendocrine tumors having receptors for somatastatin which is a protein or peptide our body makes. An artificial version (analogue) of the peptide is combined with a small amount of radioactive material called a radionuclide (currently, in the U.S, this Lutetium 177 (Lu-177). This pharmaceutical is injected into the patient. It travels through the bloodstream and binds to the tumor’s somatastatin receptors which delivers a high dose of radiation directly to the tumor.
This technology for both GA-68 scan and PRRT is called Theranostics. The GA-68 scan (low level radiation) is diagnostics. The PRRT (high level radiation) provides the therapy and they both use the somatastatin analogue. The same technique with different drugs will soon be offered for prostate cancer.
How is PRRT performed?
The therapy product now has a brand name of Lutathera. The protocol approved by the FDA is a series of four PRRT treatments spaced about two months apart. In the U.S., it is typically a full day outpatient treatment. Our kidneys are most susceptible to damage from the radiation, so the patient is given an amino acid solution intravenously which will protect the kidneys. Unfortunately, the amino acid can severely upset the stomach, so the anti-nausea medications are given first. The treatment itself is given after the amino acids and is about a 30 minute injection which is then followed by more amino acids and anti-nausea medicine. The full treatment lasts about five hours.
Lutathera is radioactive! After a treatment, you are expected to sleep in beds separated by at least 3 feet and no sex for seven days. Keep small children away from the toilet that the patient uses for 2-4 days. Stay 3 feet away from other people for 2-3 days. Stay away from children and pregnant women for 7 days. Clothes and sheets must be washed separately. For a good list of restrictions, read here: University of Michigan Lutathera Discharge Instructions. If you fly, the TSA will detect that you are radioactive for over a week, I think.
PRRT is not a cure. Like so many things involved with NETs, each patient is different. They say that over 70% of the tumors have the somatastatin receptors needed. Even within one patient however, not all tumors are guaranteed to have receptors. The treatment can be repeated, which is good.