About 4 weeks ago, I had another MIBG scan with the hopes that the lung mass would show up on it. Unfortunately, no dice on the lung but I continue to be a candidate for MIBG treatment rather than just the scan. MIBG uses either Iodine-123 for scanning (high gamma ray, low beta ray) or Iodine-131 for treatment (high beta, low gamma). Gamma rays do not cause significant tissue damage but beta waves penetrate a couple of millimeters, killing the tissue they encounter.
MIBG attaches the radioactive iodine to a molecule similar to norpinephrine which is taken up by various tissues, in particular, carcinoid tumors in some cases. Stephanie and I will go down to New Orleans on a Monday evening and have a clinic visit on Tuesday with me being admitted to the hospital at 10am on Wednesday. At 1pm on Wednesday, I will be given a dose of the MIBG treatment and I will not be allowed any visitors for the next two days.
Thursday will have a visit from the doctor and, if things continue as normal, I will excrete a significant amount of the radiation through sweat and urine. That means on Friday morning, I will be allowed to be released from the hospital. Many return home on Saturday in case of nausea but we may wait until Sunday since we will be flying. At this point, I will not be allowed to sleep in the same bed as someone else for the next couple of days and I should avoid contact with small children or pregnant women.
Over the next weeks and months, the iodine (half life of 8 days) will continue to burn the tumors and they will also monitor my blood counts as bone marrow also takes up norepeinephrine. We will continue to monitor my tumor markers which should show some reduction in tumor load. MIBG treatment does not normally reduce tumors in a fashion that can be monitored on CT or MRI scans but it does reduce the carcinoid symptom.
We don't have a date scheduled for the treatment but with the craziness of September and Steph's catering in October, we probably won't get to NOLA until the second week of October. Fortunately, carcinoid grows slowly so delaying a while is not a big issue.
We don't have a date scheduled for the treatment but with the craziness of September and Steph's catering in October, we probably won't get to NOLA until the second week of October. Fortunately, carcinoid grows slowly so delaying a while is not a big issue.
You may have heard me talk about PRRT in the past which is performed at many locations in Europe and is starting trials in the United States. Unfortunately, PRRT is hard on the kidneys and I already have some kidney damage due to the tumors constricting the ureters and the associated hydronephrosis. This makes me ineligible for the trials but we have not yet figured out if the trials are more restrictive so avoid complicating factors in the study. If it is still available, we will probably be heading to europe in the future to try and get this treatment, probably paying for it with a loan from my 401k.
Now, about that lung. I will be having a biopsy in the next few weeks to see if we can identify exactly what kind of cancer that mass represents. I have been warned that the biopsy may fail to give a firm answer because the tumor looks like a cylinder and the doctor will be trying to hit the end of the cylinder. If the biopsy fails to give a definitive answer, we will be forced to just monitor the mass and see if it behaves similar to the other tumors on my next CT scan.
