Leo Posted March 16, 2018 Share Posted March 16, 2018 Today I completed the first 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. Prior to beginning treatment, I received comprehensive brain imaging via MRI (standard and custom views/slices). The rationale for this was twofold. 1) Give me more information to support my decisioning process (I.e. do or not do PCI) and 2) ensure no existing Mets were detected and if so be positioned to start stereotactic radiotherapy (targeted vs. whole brain radiation). My MRI came back clean (no Mets detected) which was a relief. One area of concern even with this low radiation dosage is the risk of neurocognitive impairment over time (decline in short term memory is frequently mentioned). There are a number of studies that have looked at this, and my Radiation Oncologist reviewed the pros, cons, risks, and rewards to having PCI. She also offered (if i chose) to prescribe Memantine to be taken during and following PCI treatment (not permanent). This drug (which is more usually associated with Alzheimer treatment) is said to help support memory, awareness etc., and has been used in some clinical trials with some positive indications. So with all that I elected to have PCI with Memantine included as part of my treatment. My first 5 days/treatments have been fairly uneventful- some moderate fatigue, periodic sour stomach (lasts a couple hours after taking medication), and some skin redness on neck & head. I was advised to reduce the running/jogging and weight lifting portions of my exercise during treatment and get as much rest/sleep as possible, which I’m doing. P.S. I am also doing daily brain exercises for lack of a better term. The free version of Lumosity, and online tests/exercises through Cambridge Brain Tests (also free when you set up an account) are among some tools I’m using to exercise my brain. Getting some brain drills in place will I believe help me as I go through this treatment and whatever else may come my way in the future. Plus they’re a lot of fun, and you can track your progress. Im grateful PCI was an option for me & hope this information may be helpful to others. Happy to answer any questions about this, my SCLC diagnosis, treatments etc. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 16, 2018 Share Posted March 16, 2018 Leo, Good report on the PCI process. You’ve helped others who seek information on PCI through your first hand account. Thank you. Stay the course. Tom Link to comment Share on other sites More sharing options...
JoshK Posted March 20, 2018 Share Posted March 20, 2018 Hi Leo, Thanks for your update. It's very helpful. My mom elected not to do PCI on the advice of her doctors (though they were clear there was some disagreement among the team) because she had a single, small, peripheral and very clean tumor which was surgically resected and cleaned up with gamma knife as a preventative measure. However, the doctors all said that given the likely recurrence of the disease, we should look at PCI as a question of "when, not if." I too am extremely apprehensive about the side effects, and I read such conflicting stuff. The doctors made it seem like it's a one-way ticket straight to senility, but I read a lot of stuff that's much less scary online. It's good to hear that you're doing well. Link to comment Share on other sites More sharing options...
LaurenH Posted March 20, 2018 Share Posted March 20, 2018 Thank you for sharing your experience, Leo. Please continue to post updates! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.