I have been lurking and reading these past few weeks, just been so sick. Did 3, 14 day cycles of Xeloda, 1500mg@2x a day. Halfway through the second cycle got horribly sick, vomiting 15X daily, diahrrhea, fatigue, hitting the throne room every 15 minutes, sucked.
Finally ONC said I had become lactose intolerant due to the Xeloda, never heard that before.
Went in for labs every week, this Tuesday he comes and tells me that I have weeks left. All chemo has been stopped and I have been discharged to hospice. He said my liver is too far gone to even consider any trials (I wanted the Xilonix trial). Wow. Well hell.
Hospice is coming over next week, I got a list of questions from this wonderful board to ask them.
I wish I had found this forum when I was first diagnosed, it would have saved me alot of grief and helped me to better understand how my life had changed.
I have seen alot of wonderful people taken by this horrible disease, and even if I did not know them, I grieved for those left behind.
I have met many wonderful folks here too and spent countless hours reading about others, their pain, grief, joy and success. Always something to learn here.
This forum provides a unique source of comfort for those who are fighting. It is a very valuable asset.
There is not much information here about losing the fight, it is not discussed much except by a few. Not sure why that is, since we share so much information about every other aspect of the fight.
Anyway I just wanted to thank everyone for sharing their experiences, failures, frustrations, and triumphs.
I am so frightened, but I think that is normal. I am not ready, I am angry, disappointed, just a cacophony of emotions.
I pray for everyone every night, with His help I may be around a while and update the experience I am having with the end of the journey.
May each individual find peace and solace in their own source.
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice