erine

Kris9,
Thanks for your kind words.They were unsuccessful in placing the metal stent because they were unable to get by the tumour. They did put a plastic one in. There was some short term lessening of her jaundice but she is getting more yellow again. Things seem to be progressing very quickly, but she has had a few okay days and we’re soaking up time with her. I’ll keep the board posted. I am so grateful for everyone’s concern.
Erin

Thanks so much, all for your concern. I, too, was expecting treatment to be more aggressive, even in a terminal, palliative case. There is some evidence that the stent was working, or starting to help slightly. One of the major problems here is that my MIL would have absolutely never have agreed to go back for the stent replacement because the recovery was so horrible for her. I keep using the past tense here because mom has deteriorated very quickly and yesterday she decided to go to hospice. We were shocked by this because she doesn’t seem sick enough but they agree she needs to be there because she is so weak. I’m kind of at a loss. I so wish things had gone differently. I wish the stent had worked. I wish she would have felt well enough to get back to London and get another put in. I wish she wasn’t in hospice less than a month after her diagnosis. And I know that everyone here understands exactly what I’m feeling right now. Thanks again for all of you support,
Erin

Mom had a horrible morning but she did rally this afternoon, somewhat. They were able to get a hold of her surgeon and he said that with her age and with the type and location of the tumour it can take up to two weeks for her to have symptom relief and that her jaundice may never fully go away. I am paraphrasing, here, because I didn’t speak to the doc myself. He said that he would pencil her in to try to place the metal stent on November 12 should she so choose. My concern is that she just may not feel well enough to face another procedure if she doesn’t get any symptom relief before then. The doc also said that sometimes, people simply fail very quickly with this cancer. I know this is true, it’s just a bit of a shock. She is resting comfortably at home, which is where she wants to be.
Lainy, when you say it will be a rough ride if this stent isn’t properly engaged: can you tell me what you mean by that? Will she progress to along the path to liver failure? Is that what happens when painless jaundice (well, not so painless anymore) simply progresses with ineffective prevention? How long can something like that go on before the body simply gives up? I know you’re not a doctor, but I’m trying to prepare myself for what this all could look like. At this rate, I’m not sure she’s going to be here in two weeks to try for the metal stent.
As always, thanks so much. Support from people who have been there is far more important than I had realized.
Erin

Thank you so much for your support thus far. I feel like I have read so much and yet understand so little. Mom doesn’t have an oncologist. She was adamant that she not have a nasty operation, chemo or therapy. Little did we know that none of these would even be suggested as an option. I understand why, but really, it is now in the hands of palliative care (and the Lord, but that’s a given). The surgeon that did the ERCP is at the university hospital an hour away. He didn’t schedule a follow up, but did schedule another ERCP to replace the stent in February. We aren’t unhappy with the level of care she’s gotten so far as everyone has been so kind and compassionate and she’s been tested and seen quickly (which doesn’t always happen in socialized medicine). But I do feel a bit like the doc who did the procedure sort of left us hanging because we have no way of knowing whether it worked or not. Maybe the stent just isn’t working. Is that possible? Would it be her bilirubin level that would need to be tested to see if there was any improvement? I’m sure the palliative care doc would order that test for us. She has just been ordered some new drugs to help with pain, sleeping, nausea and a steroid to help with energy. I just pray that she stabilizes somewhat because I don’t see her making the one to two years she was given as a prognosis unless she improves from her current state. I know this is terminal cancer, I know that we are in for a long, rough haul. I was just hoping that she would have a few “better” months after this stent was put in before the really bad stuff happens at the end. I know that I sound naïve here and that this cancer is particularly nasty, so I really do appreciate any and all of your input.
Erin