Cancer Spreading and on last treatment option I will have many questions

First thanks to all of you who posted in my other thread about my CEA climbing and the possibility of Covid Vaccine involvement. I am starting a new thread because I feel I will get a few more views and with the bad news my last scans revealed I will have to make some pretty big decisions in the coming months.  Please read below to get an idea of where I am currently at with my disease and help to answer some of the questions I may have. I will try to answer any of your questions about my current condition if asked.  I guess the first question relates to anyone's experience with Stivarga and any data you may have concerning the effectiveness of Stivarga.  I have read a good bit about it but my overall impression is that it only works about 10% of the time and even then it has been shown to only increase survival by around 3 months vs. placebo.  

My next question would be; How does hospice work and how and when will I know it's the right time?

I guess my last question, for now, would be; How does palliative care work?  Docs at MD Anderson suggested that I seek palliative radiation care for the pain in my hip that may be caused by a new met on my Iliac bone, and possibly radiation to my original rectal tumor which has begun to regrow and is invading the perirectal space.

Thanks in advance for your replies

Tim

 

I am currently about 3/4 of the way through my second round of Stivarga and I must say that this round has been easier than the first at least so far.  It seems that the original jump in CEA was caused not by the vaccine but because of my cancer progressing.  Dr. did say that for some reason my cancer has become more aggressive than before and was growing at a faster rate than they have seen with previous progressions.  

I have been at MD Anderson for the past few days for scans, bloodwork, and appointments with my oncologist and a doctor that is over numerous clinical trials.  The bad news is that my cancer has been growing for a while now.  The first sign that something was amiss was a rising CEA with no progression noted on the ct scan this was in April of 2021 and at that time a liquid biopsy was performed.  I was called in May and told that the liquid biopsy had shown a new NRAS mutation that was not detected in Liquid biopsies 3 months before this. The docs took me off of Folfiri with Erbitux and placed me on Lonsurf with Avastin.  At my next appointment in July, my scans showed growth/progression in my liver mets so I now had definitive proof of progression.  With this progression, docs took me off of Lonsurf with Avastin and put me on Stivarga. I had an extended delay with getting my Stivarga prescription because the Insurance company took forever to approve the drug and then when it was finally scheduled to be delivered we got hit hard by Hurricane Ida. It was so bad that UPS had several weeks of no deliveries in my area so the Stivarga was sent back.  I finally got the drug on September 16th. I returned to MD Anderson on October 23, 2021 and scans showed more growth and new mets.  

I have new lesions in my perirectal area, 2 new Mets on the liver, a new met on my iliac bone in my pelvis several newly enlarged lymph nodes, numerous low-grade opacities in my lungs that may or may not be new Mets.  Could be some type of infectious process according to the oncologist at MDA, I will know more at my next scan.  My original rectal tumor has begun growing again and has invaded the perirectal space which the Drs. believe is causing all of the pain in my rectum and hip.  They also recommended that I seek out my radiation specialist to see if these tumors in the rectum and hip/iliac bone can benefit from some palliative radiation to relieve the pain.  I will find out about that next week when I see my local medical oncologist

They recommended that I stay on Stivarga since my CEA numbers are falling now.  I will get rescanned in mid-December to see if the Stivarga is working or not.  Anyway, with all this news, I asked what kind of timeline I am looking at if the Stivarga doesn't work and the oncologist at MDA said between 6 months and a year.  So I now have to decide if I want to try a phase 1 clinical trial at MDA or look for local trials.  I am not very inclined to enter a phase 1 trial since I would rather have 6 months of quality time rather than keep fighting a losing battle with an untested drug for a hail mary pass.  I have some big decisions to make in the next few weeks but I will keep fighting even if I don't do a trial.

Thanks again folks,

Tim