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Returned late last night from MD Anderson. Neil’s scans show stability of disease even with being off chemo for six weeks. His tumor markers were also good. White counts and platelets remain down. They recommended more time off chemo and gave approval for hernia surgery. We were very happy with this report!
Thanks so much for caring and it was good to read of another’s experience with PDT. Thanks for the link! I don’t know if the esophageal varices are new or just newly discovered. They have not been mentioned on previous ct scans, but don’t know if they would show up. Neil is having repeat scans next week so will see. We seem to be eliminating the causes of pain and it seems to be coming down to scar tissue. He still has very large abdominal hernias and is really wanting to have these surgically repaired. Will discuss with onc next week about whether this is recommended. It is a quality of life issue for him and I will support his decision although I know there are risks and he will have to be off chemo to recover from surgery. He tried the pain patch last night and tolerated it well. Had some breakthrough pain which we had meds for. So I think we have a plan for addressing pain.
Marion’s, he has tried enzymes. I think they helped with the gas he seems to get from everything he eats. Problems with fatty foods seems to vary, maybe on how well his stent is working at the time. He had an EGD and colonoscopy today to try and determine source of abdominal pain. The doctor found evidence of his portal hypertension in esophageal varies, but no colitis. No real source of pain discovered, but she did prescribe a pain patch for time released pain control. He has a paracenthesis scheduled for tomorrow to drain ascites. Hopefully this will make him more comfortable also. The ascites is not new, but recently worse. We go to MDAnderson next week for labs and scans. His bilirubin is down since PDT but he does not feel any better – and we had such high hopes for that treatment!
Thanks for all the kind words. Although we believe we have a great medical team, I just realized we do know one single other person with this particular disease and how isolated we have been. To answer the questions, a year ago Neil developed colitis after several months of Xeloda. The colitis was confirmed by Ct scan and he was taken off the Xeloda. Since that time he has had some abdominal pain on and off, usually associated with meals, and we and the doctors attributed it to lingering intestinal inflammation that was a side effect of chemo. On our last trip to MDAnderson it was decided to give him a 6 week break from chemo as his scans were good, Ca 19-9 was normal, and liver functions were stable to see if the pain got better. Well the 6 weeks are nearly up and the pain is not improved. We saw our GI doc who because the pain is very localized and worse after eating, believes it may be scar tissue from the attempted liver resection and has scheduled an EGD and colonoscopy for Wed. Neil has pain meds but a discussion of pain control is definitely on our list for our next onc visit. He also seems to have more abdominal swelling so have called his onc office about scheduling a paracenthesis. I am hoping we will have some answers Wed after the procedures about what is causing this and how it can be treated.
