Experiences please!


I'm somewhat new here.  My father on law was diagnosed with stage 4 cc with mets to liver and peritoneum. The surgeon explained after colon resection that it was like a bomb went off inside him sending cancer seeds everywhere. At the time of diagnosis his cea was 45. After 4 weeks of healing at home he went to md anderson. He received 2 folfox treatments there with no change to cancer indicated on scans. He was told he would be able to get the same chemo locally so he decided to come back home. At his first appt with oncologist after returning home his cea was 163. He was given one more folfox treatment that day. After that treatment he ended up in the hospital with shortness of breath, dehydration, and pain. He has continued to get chemo while on hospital.  Chemo has changed to irinotecan and erbitux.  His cea as of yesterday was down to 25.  The numbers look so positive but he still in so much pain.     We are told that he has an ileus and his stomach is asleep. He has a tube that was surgically placed in his stomach to drain the fluid. He has not been able to tolerate food very much. On the last 5 weeks he has had very little including broths, milkshakes, and Popsicles. He's lost about 55 pounds since diagnosis/ surgery. He has not been well since surgery. Before surgery at the time of diagnosis his pain was minimal. Just a bloated feeling mostly. His spirits are down as he feels he can't get any pain relief.   There are times when the pain subsides but he is just miserable/uncomfortable most of the time. His biggest complaint is that he feels like that tube gets stopped up. The nurse comes in checks it and says it's not stopped up. A positive side is that he handles all the chemo that he has been given very well. It's hard to celebrate the drop in cea when he feels the way he feels. Just curious if anyone else has experienced or heard of a situation similar to this. The oncologist is great and seems to be trying everything he possibly can. Thanks in advance for any information you may have.  


  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    Hi marygrace

    My brother has stage 4 rectal cancer with mets to liver and lungs. He's on Folfiri and erbitux. He was just hospitalized with clots to the lungs and had to have emergency surgery to remove the clots. they placed a filter in his groin to prevent any future clots from reaching the lungs and heart. he just got home from the hospital yesterday. My brother doesn't complain of any pian, so I can't help you with that. He did get a terrible rash from the erbitux, but the doctor prescribed monocycline (an antibiotic) and hydrocortisone creme and it helped clear it up. He used Head and Shoulders as a body wash as per a few suggestions on here. It seemed to help tremendously. The other side effect he has is bad diarrhea, which has been tough to control. One of the Folfiri drugs, I'm told, is causing that. They are giving him an anti-diarrhea medicine but it doesn't help all the time. He is very, very tired from all the chemo drugs. Until the clots, he was just dealing with the side effects day-by-day. He has a great attitude and is determine to beat this. I'm his sister and I help him because he's intellectually disabled. He needs me at his visits because he doesn't understand what they are saying, so I am there to help explain things to him and make sure his paperwork is all filled out correctly. Anyway, I wish your father-in-law well and hope he starts feeling better soon. I don't know if any of this helped, but this is my brother's recent experience. If you look on my space, you will see his story and all the other info about his surgery, ileostomy, reversal, chemos, radiations, etc....

    Good luck.