Tykerb/Xeloda & 75 year old mother
Dear wonderful women on HER2 site,
I've been receiving the blessings of your messages of hope for more than one year now. I've never posted. My mother, whom I love dearly of course, was diagnosed with HER2+++, Stage IIIC with "skin involvement" in February 2006. She ended up at MD Anderson after seeking opinions from UCSD (we live in Carlsbad, CA) and also Johns Hopkins. Because of the skin involvement, her Anderson ONC recommended a mastectomy. My mother said she would rather die. She was adamant: Lumpectomy or nothing. Her surgeon finally agreed to it after the radiologist agreed that it was possible to address the skin issues through radiation. The surgeon did a masterful job getting clean margins, but 13 of 19 lymph nodes were positive. She finished 28 of 33 rounds of rads, but could not take any more. (She had neoadjuvant taxotere & herceptin, followed by A/C (once, only) to shrink the primary tumor.) She continued with herceptin 6 months following surgery, but Anderson detected progression to one lymph node in the other breast, plus two lesions on her spine at the 6 month check up. She began participating in a trial to boost the effectiveness of herceptin (and her immune system). However, on a return visit to Anderson (6 weeks later), they found more progression--another lesion on the spine and another lymph node in the opposite breast. (Her CTC count is <1, which we've been told is very positive.)
Treatment was changed to T/X and it's been hell ever since. She was warned that she had to take immodium as a preventative, but she was convinced it was causing nausea. It was nearly impossible to get her to take it. On day 10 of the first cycle, she had 10 bouts of diarrhea. Several days before that, she was having 4-7 bouts. I begged her every day to drink more water and take the immodium plus her antinausea meds. She sipped a bit of water, only. Finally, I drove to her local ONC and cried on his nurse's shoulder (she's a saint). The nurse said she MUST come in for fluids. Finally, we were able to reach her ONC in Houston. He, too, said "she must get fluids immediately." Thankfully, with all of the pressure, we were able to get her to agree to be dragged in. She has received 5 bags of fluid since Friday. She is doing much better, and they have given her a prescription antidiarrheal vs. the immodium. She resumed Tykerb yesterday and will start a lower dose of Xeloda next Monday.
When I talked to the nurse, she said "your mother would benefit from hospice." She made it clear that hospice does not mean my mom has less than 6 months; it is just a way to get additional help in the home. My father (75) is the primary caregiver. He does a good job, but he is ex-military and not so good on the TLC front. I provide that to the best of my ability, but I work full time.
The way my mother has been acting made me think she was giving up. But at her appointment yesterday with her local ONC, the subject of hospice was brought up. It shocked her. She did not think she was ready for it. She accused my sister and me of "knowing more than we were admitting." We don't know a thing, other than she has not been very willing to do things that will mitigate her suffering. By the way, she has been essentially bedridden for the past 6 weeks. We encourage her to move. She will not, other than to go to the bathroom.
I don't know what I am asking. You all seem to try so hard to stay positive and strong. I know that my mother is suffering but she is not very willing to make changes to help herself. Her actions seem to say "I'm giving up" but her strong reaction to the notion of hospice contradicts that. Of course, I want her to fight! But she gets angry at us when we encourage her.
I apologize for the length of this. I feel lost.
Thank you very much for anything you can suggest.