Bridget Medical Update Feb 2021

I have some updates to keep you in the loop on what has been going on with our Gigi. January was a hard month for her as she learned some new information about her health and had her 4th PRRT treatment. She also was only able to see Craig and the kids for 1 week that month. Craig and the kids went to visit his parents in Venice, FL for 2 weeks. Upon their return, Bridget had to quarantine for a week until they were able to get a COVID test. One of her scans at the end of 2020 showed possible compression fractures on her spine so her endocrinologist ordered a Bone Dexa scan that she had in January. The results came back that she has osteoporosis and several compression fractures on her spine and her right pelvis. The source of the bone depletion is from having excessive cortisol for 2.5 years. Her tumors produce ACTH which causes her to have off the charts high cortisol. She is getting a Zometa infusion this week to hopefully halt the further degradation of her bone density. We are discussing other long-term options as well, but there are a lot of balls in the air about next steps. So more to come on that down the road.

Bridget went in for her 4th and final PRRT (it's a low dose targeted radiation treatment specific for NETs). Unlike traditional cancer treatments that show progress fairly quickly, PRRT does not, most people don't see results until at least 4 months post 4th treatment. Continued prayers for shrinkage from the treatment are much appreciated. Or a word of encouragement in the comments section at the bottom of the blog I know would be welcome as well!

Let me tell you how faithful and strong our Gigi is. Because of COVID-19, I could only drop her at the door. There she is sitting in a wheelchair with her bags and food cooler (Gigi doesn't do hospital food well, she was always my most expensive daughter :-) ) waiting for the transportation services to come and bring her to her infusion suite. I know it’s scary for her, but she never complains. I think she is trying to be strong for me. This treatment is not easy for her, as the radiation punches the tumors and they get pissed and secrete excess hormone (ACTH). It causes her potassium levels to drop critically low and this round she incurred very high blood pressure. She also had to go on oxygen as her oxygen saturation levels were low. It seemed from the chest x-ray that she had early signs of a virus. Although she tested negative for the virus panel. Thankfully her oxygen improved while still in the hospital and she is feeling back to normal.

After she was discharged from the hospital she had to go to a different UChicago building to get her monthly Lanreotide injection, which is part of her ongoing treatment. It was a long week for our girl. But rather complain about the events of the week she comes out excited to be out and to get home to see Craig and the kids. She is such an example for me.

Last week we had one last trip for a while to the University of Chicago for a standard PET scan. This scan was not to evaluate the success of the treatment but to make sure there is not a more aggressive component to the tumors (meaning that some could be fast growing). The liver transplant team requested this scan to verify that her tumors are well differentiated. The standard PET scan uses a different isotope than the gallium PET scan (which is what she previously had). Slow growing NETs do not light up on a standard PET scan so they wanted to see no lights on her scan. Thankfully the results came back that yes all her tumors are slow growing! This is one more tick in support of her being approved for a living donor liver transplant.

I know some of this may raise more questions than it may answer. Over the next 4 months there will be a lot of moving parts with decisions about next steps. I would be happy to answer any questions you may have, so please feel free to ask away or leave good wishes for Gigi in the comments section at the bottom of the blog.