Topic: Introduction (almost farewell ...)

Hi all,

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.

Re: Introduction (almost farewell ...)

Marcos..You are a wonderful son to your Mom by advocating on her behalf in the manner that  you do.
Please know that we are not physicians and that all information given is based on our personal experiences, that of others shared on this site, and the education and training some of us received via numerous medical and research sources.
Two of the most bothersome symptoms of bile duct cancer end stage disease are pain and nausea neither of which your Mom is suffering from. That is great news. A biliary stent would allow for bile drainage.  Do you know why it is not working for your Mom? Is it due to the blockage not being accessible?  Is it possible to use an external drain?  I would discuss this with the gastroenterologist. 
You also don’t mention the drainage of the ascities.  Has your Mom undergone abdominal paracentesis?  Reducing the fluid will lessen the pressure on her stomach and may allow her to consume small portions of food.
BTW – your English skills are more than adequate. 
I am so glad that you have found us.  Please, stay in touch.  I am sure for others to chime in real soon too
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introduction (almost farewell ...)

Dear Marion,

first of all thank you so much for your kind words of encouragement and your really helpful advice. Surely we're not physicians, but I'm really impressed with the amount of useful information I've been reading on this forum. It also kinda takes doctors out of their pedestals for me - by no means I want to dishonor the medical profession, but sometimes I feel they lack creativity, always following a sort of rehearsed script. Maybe I watched too much "House" anyway :-)

Now to your points: my suspicion (which in the end was confirmed by the doctors) is that the tumor has grown around the "branches" of the biliary tree inside the liver, so the stent has not had much of an effect. He did suggest an external drainage, so I called the oncologist again and he will forward my mother to a radiologist so that he checks if such a procedure is feasible. He even said that, in case it's successful, she might be eligible for radiotherapy again. So there's a (dim) glimmer of hope here.

I asked him about the paracentesis, and he said that it would make sense if she has a lot of fluid and/or abdominal pain. I've just noticed that her tummy is huge, and she did mention some discomfort in the area, so I do think it may be a good idea. However, I'll go after the external drainage first.

Once again thank you so much for you input !

Re: Introduction (almost farewell ...)

Marcos...you are welcome.  Collectively the members on this site have addressed all aspects of this disease and they continue to feed new information to us - hence our board is brimming with useful information.  So many wonderful people have come together due to a disease little understood and much neglected in the medical research world. But things are changing rapidly.  We are witnessing an increased interest by all stakeholders.
Marcos, good luck with the upcoming appointment and please, stay in touch.  We care and we are in this together.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introduction (almost farewell ...)

Hi Marcos,

I would like to welcome you to this site and tell you that I am very sorry to hear about your dear Mother. It seems as though you are doing everything possible to help her. I am very sorry, but I do not know much about stents since my daughter does not have any. I think the most important thing you can do is make sure your Mom is not in pain and is resting comfortably. I will pray that the doctors will be able to help her and she becomes stronger. Best wishes.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introduction (almost farewell ...)

Dear Pam,

thanks a lot for your kind words ! I've read your story in your posts and, being a parent myself, I get terrified with the idea of being in your position. I can only congratulate you both on your strength and willingness to help, and wish that a breakthrough comes in time for your daughter to get rid of this nightmare.

All the best,
Marcos

Re: Introduction (almost farewell ...)

Thank you so much for your kind words, Marcos. They mean a great deal to me. Bless you.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introduction (almost farewell ...)

Hi all,

a short update: my mom is in a hospital since last Sunday. Her health has been deteriorating every day, so I expect it won't be long before she passes away. She should get the external drainage on Friday, but I'm not sure she'll make it until there. Tonight she would be receiving blood, since she's suffering from severe anemia. Perhaps this will give her a little boost, but it's hard being optimistic after seeing such a constant decline in her condition.

Anyway, I'm not expecting any advice - I was asked at the hospital to remind people around me to donate blood, so I'd like to take this opportunity to do so. That's the least I can do to honor her memory.

Once again thanks a lot for all the helpful information, and I hope I can contribute somehow to the cause in the future.

Best regards,
Marcos

Re: Introduction (almost farewell ...)

Marcos...my heart is with you this precious time.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introduction (almost farewell ...)

Dear Marcos,

I am praying for you and your dear Mother. My heart goes out to you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.