Just wanted to say hi and introduce myself.
I started to write out my whole story and realized holy hell it was long, so the cliff notes version it is.
My diagnosis is stage IV Colorectal cancer. I have metastasis to my liver (one large tumor that is actually beginning to grow out of my liver and several spots) and had 4 lymph nodes come up positive.
Napkin ring tumor found in September 2015. Insurance issues forced a wait until November.
1st surgery, sigmoid and a good portion of my rectum removed. Proud owner of a spanking new colostomy. But had the hope it could be reversed. Had issues with a weird discharge, opened incision site (tumor in the sigmoid was too large to remove laproscopically) and placed a wound vac
Home from hospital for 3 days before doing my impression of evil knevil. Felt a pop but it didn't hurt so I kind of blew it off. The next morning everything went to hell. It involved an incision filled with stool and a super fun ambulance ride with my incision only covered with gauze.
2nd admission, 2nd surgery. Lost more colon, colostomy moved and now permanent. I now have the wound vac placed on 2 sites. It was determined the original colostomy was breaking down causing the weird discharge to begin with.
Weeks of healing, vac dressing changes, a rectal abcess and sepsis. I would really prefer to never be admitted to a hospital again.
Finally get to start chemo next week. Can only do Folfox for now because my wounds have not healed fully. The plan is to add Avastin when the wounds are healed fully.
I can honestly say I'm scared. It's hard to hear your oncologist tell you that he can't say you will be cured. I keep thinking I'm not done yet. I have a family that I want more time with. I know the Dr. has to be cautious, and I know I will fight like hell to beat this but it still weighs on my mind. Hence posting this at 1:30 am...
Anyway, that is the long / short version of my story. I look forward to getting to know people on here and sharing support as we all travel this journey.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016