Postby gfpiv » Fri Mar 17, 2017 8:43 pm
I went to MSK for the pump install (and colon primary resection), didn't have Dr K as my onc, but a colleague of hers who was fantastic (as were the colon and liver surgeons I had.) I was lucky to live less than 4 hours away, but knowing what I now know, I would have gladly taken a plane if I needed to. Good news is that draining the FUDR after 2 weeks and refilling with saline was not too difficult, so my local onc agreed to learn to do the drainage, and also bi-weekly systemic FOLFIRI at the same time.
At dx I had over half my liver cancerous, and 2 portal lymph nodes; no lung involvement. I didn't find out about HAI until halfway through 12 txs of FOLFIRI+Avastin, so MSK told me to wait to see them til all 12 were done (though it can be slightly more effective in many cases to do the pump as first-line.). Near-miraculous reduction from first line for me; over 90% reduction in size of mets and CEA - but still some live cancer.
MSK agreed to resect colon, 2 portal lymph nodes and install HAI. 2 weeks full of FUDR (basically 5-FU), then 2 weeks of saline drip in pump. Every 2 weeks I also did systemic chemo - FOLFIRI in my case - to address micro cancer cells in lymph nodes also.
About 1.5 years of HAI and FOLFIRI, all mets in liver calcified on scans, unsure if any cancer cells left, but liver numbers (AST, ALT and AlkPhos) got too high to continue treatment, and remain high to this day (though I can't tell any bad effects from it). I also had bile duct damage which caused skyrocketing liver #s including bilirubin. Another great MSK interventional radiology surgeon found the issue on a scan (my local onc couldn't), and she fixed it with a stent...which had to be replaced / cleaned out 2 more times...before they finally said that, due to my good cancer prognosis otherwise, they wanted to do a permanent biliary bypass procedure. That worked great, brought bilirubin down and stabilized other liver #s.
I stayed off chemo for another year or so, then my CEA started creeping up so we did a PET and found one pesky liver met was still active. It was burnt out with RFA at MSK, and I've been in the clear for the past 2 years since (knock on wood).
Lastly-
I have been absolutely blessed beyond belief to be here 7 years after getting a 2-yr life expectancy from my local onc. I am so very thankful, and I really wish everyone undergoing treatment would do even half as well as I did. But not everyone is a candidate for HAI, and even then, not everyone will have a dramatically positive response. That said, if it weren't for HAI, I firmly believe I wouldn't be here today. By making me aware of this treatment option, the folks on this board, in essence, saved my life. You are doing a great thing by taking "control" of your family's cancer challenge, and educating yourselves on your options.
So PLEASE(!!!) do not simply take as gospel the opinion you will hear from the vast majority of oncologists that are not personally experienced with HAI...because they will almost certainly "poo-poo" its potential effectiveness. I, and many others here, will testify that it can be life-changing under the right circumstances. Many times I look at the joyful smile of my 2-year old daughter and realize that miracles do happen. Regardless of what treatment choice you make, here's to you and your wife finding your own miracle in this difficult time!
Don't hesitate to PM if you'd like to talk about any of this further.
-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015