What are your experiences with increased sleep and decreased appetite in liver mets patients?

Breast bone and liver supporter

 Hi folks, my name is Don and I'm new to the forum. A bit of background. My wife (52yrs.) Has breast cancer initially diagnosed in 1998. She had a lumpectomy and radiation at that time. 5 years later it came back and she had bilateral mastectomies with reconstruction. 5 years later it came back again and she had chemo and started to have radiation but it burned a hole in her chest and they stopped after 2 sessions. 5 years later, Memorial Day 2014 to be exact, she was on her way home from work (RN) and she got double vision while driving home. Went to E.D. scan showed spots on skull but nothing in her brain. Bone scans, Cts and Mri's later, show extensive bone mets throughout her spine, skull, skullbase ribs and pelvis. Biopsy shows ER pos. They begin Letrozole, steroids, palliative care meds, biophosphinate infusions monthly, radiation x 10 to her skull base. Her double vision quits and shes O.K. for 2 months. Then she can't eat, swollen upper right abdomen, nausea. Ultrasound followed by MRI shows extensive mets to her liver which weren't visible just 2 months prior.

 Now with liver mets she began weekly Taxol for 12 weeks until her side effects became too much. Rash on skin like a burn, numbness in her finger tips first then through her whole hand and feet. She opted out of any more chemo then and is now back on Letrozole, and still getting monthly biophosphinate infusions. Her CA-15-3 numbers in July were in excess of 1200 and her chemo brought those down to the high 300's before Christmas. I know normal is less than 30 so even though it's decreased, it's still massively elevated.

 Things through the holidays were fairly good. She got around the house O.K. and did small things to keep her busy. She tired easily and was sleeping about 10-12 hours a day, but in good spirits. Over the last week however she is suddenly sleeping a lot more, like 16-18 hours a day. She is eating very little, like an egg the day before yesterday and a little bit of rice yesterday. This is very unlike her. She now is going deaf from the radiation to her skull base in August. It seems strange how much her hearing is lost months later and the past 2 days she had major pain in her ears. Now I want to let you know she is the toughest woman I have ever met. She doesn't complain or exaggerate. If she says she's hurtin', believe me, she's hurtin'. She finally got on top of the pain with Methadone, Norco, and Morphine. A couple of days ago she was very loopy at night. She got up and cooked 2 sausages, left the stove on and went back to bed without even eating the sausage. She left the kitchen faucet on x 2 and is putting things in wierd places. The next morning she seemed fine, a bit bleary but fairly clear headed.

 Sorry so long winded. I guess I'm curious if others have had these experiences and how did they progress? We have an 11 year old son and I work 12 hour night shifts 3 nights per week so I'm trying to figure out if we should call hospice now, if I need someone to spend the nights here when I'm working or what. Any thoughts, suggestions, experiences would be appreciated.

 

luvinlex

worrried

I think especially with the use of the stove and other possible dangerous things, a "sitter" who does nothing but watch her, might be a good idea if it's affordable and/or your insurance covers it. How is your son handling this? I took care of my mom at her home with Hospice but there are no nurses there.. they only come in and help change sheets, help with bath in bed and change gown. I had to do all the rest. If she needs hospice and you can't care for her day and night, she might need to be admitted to the hospice unit in the hospital. They recommend Hospice if the doctors think they have only 6 months to live, but I know a lady that got kicked out of hospice because she lived two years.. and they told her "call back when you get really sick" - I know this post is old.. but my best to you.