Thank you everyone for sharing your experiences and suggestions. It has been a roller coaster this week. One day my mom feels better and the next day she's just ready to give up on it all.
It's day 8 and she's still in the hospital. Her abdominal pain has subsided but she's had diarrhea for the past four days. She's had several "accidents" in the hospital and she is so demoralized, weak and sad. I thought she was doing better day before yesterday because she sounded good on the phone and told me she ate breakfast and lunch. I found out yesterday morning from my aunt that she's not telling me the truth. She's still not eating. But then when I spoke to my brother yesterday afternoon, he said she was in better spirits and went for a walk with my dad and ate half a banana. I spoke to my mom last night and we had a good cry over the phone. My mom is tired of being sick (so understandable!) and says she absolutely "isn't going to do this any more," referring to chemo. She said she's trying to eat but afraid because of the diarrhea. The hospital finally gave her some immodium yesterday, so hopefully that will help and she will start eating and getting her strength back.
I cannot imagine what my mom is going through but this is so hard on everyone who loves her. My aunt spoke to the nurses yesterday and they are going to send a social worker to room today. Hopefully that will help my mom. l
Following were some questions in the email I sent to her onc last week and his response:
...I read a couple abstracts about severe ileitis with capecitabine and it appears rare. I have a few questions for you:
1. Should she be on antibiotics? I believe Dr. Paul started her on some and then stopped.
2. Should she even be on capecitabine since she is MSI?
3. What are her alternatives?
4. What are the next steps?
no she doesn't need antibiotics since her bowel inflammation is not infectious
the inflammation of the bowel is not a rare side effect of the capecitabine, but the severity of her inflammation is not typical.
the msi would argue against the benefit of chemotherapy if she had stage II disease, but not satge III
her alternatives would be dose reduction of the capecitatbine, proceeding with oxaliplatin alone, or stopping further chemo altogether
she needs to recover (best medicine at this point is time, and motivation). She will not magically get better unless she works for it including eating even when she doesn't want to, working to get stronger even if she is tired.
She sees me in 2-3 weeks and at that point, I hope to help her make decisions about the next steps based upon how she has recovered.
Because this is not cancer, but side effects of the chemo, I have faith she will recover, but please continue to motivate her as best you can, and reassure her that this is not typical or what we had in mind with respect to her treatment.
I haven't responded yet but I am going to ask about the immunotherapy and whether she was tested for dpd reaction to capecitabine. What else should I be asking or need to know?
BTW, regarding her MSI, her onc was going to discuss that and the genetic testing at her next appointment but we never got that far because she landed in the hospital instead. We will discuss at her next appointment at the end of this month.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear