Today was mom's much anticipated appointment at Stanford oncology with the amazing Dr. Albert Koong.
Before I get into that I'll back up about a week.
At her last appointment at her medical oncologist she went over her latest
PET scan and it was found that fortunately no metastasis was showing up and unfortunately she has a cirrhotic liver. Mom has been off her chemo for at least a month or more. There was an episode a few weeks back when she was very confused due to elevated ammonia levels. It was determined the elevated levels were likely due to some amount of liver damage. The local oncologist basically sent mom on her way saying there was nothing else she could do for her. We have all been terribly disappointed in this local doctor as well as her office as a whole. I have never seen an office of any type run so inefficiently.
So...off to Stanford
Our nurse Gillian and the doctor, Dr. Koong, have been absolutely amazing through this entire process. Every step of the way mom has been treated with every bit of respect and dignity she deserves. Today was no different. Along for the ride today was also Jake and Lexi. This was Lexi's first trip up to Stanford.
I think we were all a bit nervous heading up to this appointment and what it might hold. Mom has active cancer, a cirrhotic liver, and is off her chemo. Can this possibly lead to anything good? It's been a hell of a week for all of us.
Down to the nitty gritty.
Mom's liver is severely cirrhotic and probably not far from failure. This is why she was taken off the chemo some time ago. The concern about taking her off the chemo is that it is likely holding the cancer at bay. So, it's a bit of a catch 22. Leave her on the chemo to destroy the cancer and the liver gets destroyed. Take her off the chemo to save the liver and the cancer is free to do as it wishes. According to the doctor the best thing we could hope for at this point was that mom has some type of hepatitis which would be causing the liver problems. Unfortunately according to the labs back this morning, that isn't the case. This means that the liver cirrhosis is related to the disease. Whether the cirrhosis is being caused by disease progression or simply by the chemotherapy is yet to be definitively determined. When talking to the doctor, if I recall, he seems to think it is more likely from progression. Of course the chemo she's been on is known to cause liver problems, I don't think it is very common. Nothing about this cancer has been common though, so who knows.
Also back from the lab is that her CA19-9 level is now at 262 from 98.
Her most recent PET does not show that the tumor has necessarily increased in size or activity. The information is somewhat contradictory in that the CA19-9 level has increased but the scans are not showing an increase in activity or size. It seemed to have even the doctor a little puzzled.
So what's next? On monday, she will have her ascites drained again and this time will be tested at cytology for malignant cells. This would be a definitive sign of disease progression. She has been referred to a Stanford liver specialist who has an interest in hepatic issues around cancer. For now we wait for the paracentesis result, which may take a week or more, and the meeting with hepatology.
To quote Dr. Koong, "We are in the bottom of the ninth, and the relief pitcher is coming in, but the game isn't over yet."
We continue to hold out hope. Your continued prayers, notes, emails, facebook posts, phone calls, and meals are very much appreciated by the whole family. Those of you who have left messages, they aren't being ignored, sometimes mom's just too exhausted, tired of talking about it, or just plain tired of the phone. She knows your calling though and gets ever message, so don't stop.
Thanks for all of the support.
M