Hi all,
I was diagnosed at the end of October 2015 and found this site in the first weeks but have not posted until now.
So diagnosed with Stage 4 (liver mets and potential lymph nodes in chest) - completely blindsided me. I was living life to the full in London: working 16 hours a day in banking, traveling every weekend around Europe and partying far more than what would be considered healthy. I thought I was on track for a life that I had worked so hard for, years of schooling and university but the rug got pulled from underneath me... There is a part of me that acknowledges I should have expected this - my mother passed away in 2009 but we never managed to find a primary due to widespread progression upon diagnosis, my grandmother was pancreatic, my great-aunt colon - I asked my GP if I should be doing anything after my mother passed - he said "Don't worry for now, start getting tested at 25"... turns out that 25 was too late. Despite the prevalent family history by some twist of fate I tested negative for most known genetic mutations and positive for KRAS.
I was diagnosed on a Tuesday afternoon and by Friday I had been started on Folfox and Avastin, I was being treated in London and decided against returning to South Africa (where I grew up and where most of my remaining family is). The oncologist in London was extremely optimistic stating that he expected me to be around in five years due to current advances, at first I was almost elated to hear this prognosis because all of my family members had not lasted 6 months from diagnosis but the more research I began to do, the more the nagging feeling turned into a full fledged disbelief at what he was telling me. Through this forum I found out abut the HAI pump and within a week I was sitting in Dr. Kemeny's office. Not only was the radiologist and her interpretation of the scans different (she didn't think the lymph nodes in my chest was cancer nor my 6th rib which is now thought to be fibrous dysplasia) - she thought that the HAI pump could be potentially be a good option for me given the tumour burden in my liver. Well my oncologist in the UK flipped out when she called him and literally called her crazy on the spot - he thought the HAI was outdated and it overlooked the fact that my disease was ultimately a systemic one and should therefore be treated as such.
After deliberating the pros and cons of each proposed treatment, I decided Dr. K offered me a realistic shot and not pipeline dreams. I called my younger brother in South Africa and asked him to move with me to NYC so I could get treatment here. I had my primary resected and HAI implanted on 02/24/16 and after a tough surgery with a few rather scary complications, I started treatment of FUDR and Folfox. Much to my dismay my CEA has doubled since I started treatment - I asked Dr. K what was going on and if we could move my scans up or switch up my chemo (given after 10 rounds of oxaliplatin I may have become resistant to it) - she seems to think that since my LDH has decreased significantly and my liver panel has improved so much this could be a case of CEA flare... I again am a sceptic. I know at some point I have to hand over my care and trust the doctor I have chosen but I feel the most difficult part of this has been the lack of control and helplessness. I had a scan today and will get my results on Monday (bit bummed because Dr. K wont be there) - I am freaking out but to be honest I have convinced myself that it is going to be awful.
I am scared and am not sure where to turn next - there is a part of me that says I currently have no symptoms and for the sake of QoL I should accept now what seems to be inevitable and pack up my bags and head home. The other part says that this was never going to be easy and the next step should be trials given that I am still strong enough to do it (currently the only one I am aware of is the Prof. Rene Adam liver transplant trial in France).
I am reaching out to this community and wondering what your thoughts are - is it possible for the FUDR and Folfox to have failed so spectacularly within two months? Any success once Folfox failed with Folfiri? Any experience with a CEA flare (or am I delusional for even thinking this could be a possibility)? Is now the time to consider a trial given I am still relatively strong? Sorry for the million questions, which there are probably no single right/easy answer to.
Thank you to everyone on this forum for being so open with their experiences - I honestly cannot express how much of a support it is both in terms of knowledge and experience.