Crossing the Midline

The tumor has definitely crossed the mid-line. This is something that they have been watching over the last few MRIs. It was unmistakable today. It is diffuse (not solid) in the right hippocampus (which could account for some of KK's memory loss in addition to the necrosis). There is not much change on the left side.

Dana Farber is beginning a Phase I/II immunotherapy trial. There are certain markers that need to be met to qualify for this trial. I gave them permission to test her tumor tissue for these markers, but I am not sure that I will enroll KK in it if she does qualify. The idea behind immunotherapy is that they try to create an immune response so the body attacks the tumor. This often causes swelling. When the doctors said that swelling can cause "seizures or worse", I cried...I don't know if I can do that again. One thing the doctors are not doing is telling us we have to try this or that. They don't have anything they can reliably offer and say "this works". They told us that KK can come off the Cyclophosphamide (chemo) since it is no longer effective and is just adding toxicity to her body. They said that we could continue IVC and HBOT. They were very supportive and put a lot of trust in me to make the best decision for KK.

While the tumor tissue is being tested for the PD-L1 marker for the immunotherapy trial and I pray about whether KK will participate in it if she does qualify, I am going to add in another alternative treatment that I have had "in my back pocket" for a while. As we left Dana Farber at rush hour, God brought this treatment to mind and I called the company that sells it to find out more information. The thing that intrigues me is that it can be given orally (every 6 hours to maintain saturation) and/or intravenously. I will talk to the Rothfeld Center about the latter on Friday.

I will work on getting the MRI scans on the site tomorrow.