Topic: Introduction (almost farewell ...)
somehow my first registration try didn't get through (I guess my home ISP is in the spammers list). I had given it up but since this website is such an amazing resource for patients and relatives of CC, I've tried again from work and this time it worked.
Unfortunately, meanwhile things went pretty much downhill with my mother. She's 76 and has been diagnosed last December with likely cholangiocarcinona. So I'll give a little recap on her story:
- started losing weight in September - thought it was good news (she's been always overweight)
- jaundice and dark urine started in the beginning of December
- first oncologist appointment before Christmas, he asked for CTs and a cholangio-MRI
- results checked on 27th, doctor says mostly likely CC (could be a diffuse hepatocarcinoma as well, but less likely). It's not resectable and suggests a stent
- stent inserted on January 2nd
The current situation is that the stent has clearly not worked, since her condition has deteriorated and there was no relief in the jaundice. Right now she's very frail, suffers from incontinence and is somewhat disorientated, but at least she feels no pain. An ultrasound-guided biopsy was not possible since she's got too much ascitic fluid in her liver, and due to that I could not get an ok from the health insurance for radiotherapy.
I've been to her doctor today and he told me that she has only one or two months left, since her liver will soon stop working and she'll get into a coma. He said her only hope for (a slightly extended) survival is if her gastroenterologyst tries to replace the stent to see if the ducts are somehow unblocked. She's not fit enough for chemo (that's my assessment though, not his) and, with total billirubin of 17.2, apparently she can't take gemcitabin anyway. Her CA 19-9 is also at nearly 2000, I know this should not be considered alone but it looks pretty ugly to me anyway. The doc also says she should eat as much as she can, which is not much at the moment.
I have a few questions, perhaps I should post in the relevant subforuns, but since they're somehow "beginner" ones, I'll ask them here, since it's easier to answer them knowing the background I've just written above:
- based on the description of her condition, is the doctor's prognosis reasonable? is the progression until the end also supposed to be like this ?
- I know that hoping for a cure would be nothing short of a miracle, so are there any tips that you suggest to give her the best quality of life in the few months that she has left ? I asked the doc about vitamin B12 injections and he said they'd have no effects, so is there anything else I can do ? I'd really love if she could at least regain some strength, she feels so bored because she can't walk or leave the house.
- any nutrition tips or advice ?
Thanks a lot for your support and please add my mother to your prayers, she'll be very happy about it. Please bear with my writing mistakes, as English is not my first language.