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Radiation Doc Fail: PCI Discussion


MyWifeSCLC

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Had a very disappointing discussion with my wife's radiation doc a few days ago. I asked questions about possible upcoming brain MRI, CTs, etc. and most importantly, hippocampus avoidance PCI. It's certainly early as my wife gets her 3rd cycle of chemo next week but Docs reaction was not good. I shut the conversation down because I was getting upset and I could tell my wife was not reacting well to either of us.

RadDoc said that her protocol was to have chest CT 3 months after completion of chest radiation. Well that's all well and good but Onc said he would evaluate whether to add 2 more cycles of chemo and oh by the way, 4th cycle ends 4 days after radiation ends. How do you evaluate without some sort of freaking picture of the cancer!

This is the 2nd time I have brought up HA-PCI to her and both times she has been extremely reticent to talk about it. She says that she had heard if it. I hope the hell so because the Thompson Cancer Survival Center of which she is a part of, takes part in a major clinical trial (see Dr. Gondi) for HA- PCI! I tried to talk about my wife's possible memory issues that may need to be addressed anyway which is the whole freaking point of HA-PCI. I brought up memantine for regular PCI which is a drug that helps with memory. I know this because my mom has taken it for her dementia in a nursing home. The RadDoc does not use a memory drug for her protocol on PCI. Memantine is standard and recommended by FDA for PCI. Maybe I heard wrong and her protocol included something other than memantine.

My wife and I briefly discussed the conversation later that day and I could tell she was worried about "the whole process". She said "whatever I thought best". I feel awful right now because their is now a distrust. I did tell my wife that we need to have a conversation with her Onc and get his take. She wants to wait a little while.

I did call Vanderbilt Cancer Institute in Nashville about HA-PCI and the gentleman I talked to was very energetic. He took my wife's info and said someone will get back to me. He could just be "drumming up business" but Vanderbilt is recognized by NCI.

Any advice would be helpful ... Steve

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