Uterine - 3rd round of chemo

[merrysunshine74]

Hi there, hoping someone can help me to understand what is going on. My mother was diagnosed with Stage IVB uterine cancer in May 2011; she is now experiencing a 2nd recurrence, in addition to the initial diagnosis. She has been through two separate rounds of Carbo/Taxol. On second dose during second round, she had an allergic reaction to the Carbo, so finished the remainder of the go-round on Taxol only. Six months later, CA-125 number rose, and scan showed she needs chemo again. Now doc is recommending Doxil/Cisplatin combo.

Here is what I am concerned about. Her quality of life has really suffered. She still works here and there but spends most of her time at home in bed. She has at times uncontrollable diarrhea that started after the last round of chemo, which makes it very difficult for her to travel, get thru the day without an accident. Physically she is in a lot of pain, even with pain meds. From everything I've read, this new regimen statistically (yes, I can understand and interpret stats and I'm aware of their limitations) may only increase her lifespan a few months at best. She does not want to know how long she has left, and her doctor will not return my phone calls, even with a signed HIPAA release (I would like to be able to ask him questions without her present, for fear of upsetting her). This is why I have to ask online. I understand the benefit of denial when it comes to being a cancer patient, however, for me, as her only child, the fear of the unknown is far worse. I need to know what to expect. Let me be clear that I understand completely that this is not an exact science and that any answers are just guesses at this point. I also won't share with her what I learn. I respect her right not to want to know.

So my questions are - is it at the point where she needs to be evaluating quality of life over more chemo, given the chemo has taken such a toll on her? When does hospice typically get called in? With a second recurrence, and 3 years into this, what is a realistic life expectancy? I guess what I'm worried about is that chemo is going to take away her enjoyment of the rest of her life. I respect and support whatever she wants to do, but secretly, I do worry. Thanks in advance for any help you can provide.

[Jerry_NJ]

Looks like you have about figured it out.

My wife is in a second round of chemo and I think the side effects are worse than the first time, albeit she hasn't lost as much hair this time.  Quality of life is an issue.  

She has many of the symptom you mention, and the oncologist said an average of 3-5 years was his estimate of her chances - that was about 6 months ago, frightening how fast time "flies" when there is little of it.

We have no need yet to consider stopping treatment, but it isn't fun for her or me, or our children who live far away and only hear mostly good news.  Our son is a medical doctor and he has talked with our oncologist so he fully understands the situation.  We are in the end-of-life 10 year or so window so we both have other problems affecting the quality of life and it is now necessary to ask about each medication are we better off with or without it, and the side-effects which can be debilitating

Sorry I can't offer any happy answers, but I can confirm that you concerns are on target and I suppose it would be good for someone to know what the doctors think about life expectancy - I tend to take such guess and to heart as a challenge to prove them wrong.  That helps quality of life even if it "smacks" of denial. .

[merrysunshine74]

Thank you so much for your comment and for sharing your experience. I'm sorry to hear about your wife - it's not a fun "club" to be in, but the shared/similar experiences are always interesting (and comforting to know I'm not alone, because I feel very alone in this a lot of the time - my mom was always the one I went to when I was upset about something. This has upset me more than anything, but I'm rarely honest with her about how I feel, for fear of upsetting her even more than she is already).

I really wish you and your family all the best through this difficult time. Your wife is very fortunate to have you. (and I'm sure you feel the same way about her!). Thank you again for your response.