A recap: My DW has been dealing with a number of very unpleasant symptoms. It all started January 23, with a small bowel obstruction, then surgery to correct that, 37 days in the hospital, then discharge to heal. But 6 weeks after discharge she started getting ascites and edema, so she went back to the hospital for diagnostics on May 3, showing significant progression, then spending 11 days there and getting started back on FOLFOX. She is handling it OK but there doesn't seem to be any recovery of symptoms between cycles. She still has ascites and edema, severe enough that she can barely walk, has pain and nausea that have been difficult to control, and has been on TPN since around February 1 because she is hardly eating anything. She also occasionally has a tremor in her hands and fingers, and has taken on a gloomy countenance, which had not been there much before except for short periods when she would snap out of it.
We have made numerous adjustments to our home and to the medicine regimen to try to get her comfortable. I suggested a hospital bed, but she said no, so we just got a regular adjustable bed. That has helped a lot because she can shift her own position. She has started on the Fentanyl patch, with liquid Oxy for breakthrough pain, and that has helped too. The dose on the patch is about to be adjusted from 12 to 25. She is taking zofran 8mg x 3 times daily, the type that dissolves in the mouth. She tried Lasix but that was stopped because it's not effective. They tried paracentesis but could only extract .5 L of fluid, which did not make a dent. We have home Oxygen, TPN, got a walker, tables that can go over the bed for computer and food, since she can eat a little bit. She asked me to get her a wheelchair so I have one on order. I've had to go out and get her a new bunch of clothes because none fit her anymore with 20+ kg of additional body weight from the fluid. She doesn't want any visitors and now is even asking me to leave her alone more. The optics of the situation seem dire. On a positive note, even though she is in bed 99% of the time she is still fully alert and coherent. Is this the kind of thing that other caregivers have dealt with and what do you think happens from here? The doctors seem optimistic that the chemo will do something for the symptoms but I know that doctors are in the optimism business and I would like to know what the reality is. Any thoughts?
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury