rp1954 wrote:One key to this may be how far you are willing and able to go (bi)weekly, monthly, or even once. e.g. NYC, Boston, Houston, etc.
Of course we will try to find options in Canada for plan B. As minimum we have a thoracic oncologist who was agree to do SBRT to remove all/most LN nodules (we have about 20-25). It may be plan B first step. He also said they can do SBRT for liver too (in general, not about our particular case). We have an app with him Apr.21 about lung SBRT and will try to get referral from him to liver surgeon oncologist.
I think we can travel across US for some major steps (liver surgery for example). For that case LA, San-Diego or Nashville are preferable.
rp1954 wrote:Another major key is what you can do remotely - research, telephone, (international) telemedicine, and, at home.
Can you elaborate more on these factors because it affects finding, focusing on, choosing and doing plan B options.
Research that is what I do 90% of my time every single day from Oct.6, 2022, when the previous life is over. Not sure about telemedicine as we never try it, but I believe it's not a rocket science and we can use it if needed.
We had a meeting with onc today after 2 weeks of first Folfiri infusion.
Good news - CEA dropped from 651 to 481. I believe Folfiri started work + our IVC, ALA/LDN, Mistletoe, TCM, lot of vits/supplements etc.
Bad news - If we switch to Xeloda, Health Ontario will consider it as a 3rd line of treatment. So we will have just one line (fourth and the last) in reserve. We also can pause Folfiri but only for 3 month. If longer - Folfiri will be closed automatically. During this pause, I can try Xeloda on my own - it won't be officially prescribed.
Raw idea is:
1. Continue Folfiri
2. Reasonable reduce Irinotecan (onc agree do it if we want) for minimum immune system damage (Leave 100% of 5FU/LV)
3. Add every day small dose of Capecitabine/Tegafur (gradually increasing it moving away from infusion day) to get benefits from continuously therapy. May be do it on chronomodulated basis.
We asked our oncologist about it today. He was "a little surprised", but generally agree it can works - just need to constantly monitor side effects, blood markers, etc. And of course it should be good researched before and started from real small doses.
