Poor prognosis

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Poor prognosis

by ivyday on Sat Dec 05, 2015 04:40 AM

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My mother has had carcinoid for many years. She's 84. Last month, she began experiencing forgetfulness and confusion. She has also been losing weight rapidly and feels much weaker. All this is after many, many years of well controlled disease. Today, the MD told her that the CT scan showed significant growth in the tumors in her intesting. He doesn't recommend chemo or a chemoembolization and told her she had about six months to live. Has anyone been in a similar situation? Did you beat the odds and live longer than predicted? Does anyone have advice on handling the end stage of the disease? We'd like to keep her at home. Her only treatment at this point is sandostatin. She has meds for anxiety. What can we expect at this point? 

RE: Poor prognosis

by jenn15126 on Thu Jan 28, 2016 08:49 PM

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Hi, I am so sorry to hear about your mom. We lost my dad last May after he battled carcinoid for nearly 5 years just a few days before his 73rd birthday. His quality of life was OK, relatively speaking, until the last 3-4 months (about this time last year) after they stopped treatment and gave him "less than a year". He grew very weak and lost a lot of weight, he eventually couldn't walk more than a few steps without help and was retaining a lot of water. We were in and out of the hospital with him so much, in retrospect it would have been better to have insisting on setting him up with hospice care at home for the last few months so he could have just rested there, but I think he just didn't want to admit to himself that it was time and refused to let us do it. He ended up passing away at the hospital after about 48 hours after admitting for the last time because he was no longer able to swallow water or food. They gave him a very steady drip of IV pain medication that we could control and he didn't seem to be in any pain or discomfort on his last day. He faded in and out of consciousness, talked to us a few times and passed peacefully in his sleep in the middle of the night. I hope this information helps, but I know every person is different. If you have any questions at all, feel free to message me. I think the one thing I would have done differently is insisted he have at home hospice care. I think he would have been so much more comfortable.

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