Topic: Bile Duct Cancer stages

Hello to all. I haven't been on too much of recent days, busy busy... I was wondering if anyone could share what happens with patients who have inoperable klatskin's tumors. My sister has stents put in, is on massive antibiotics and bile thinner drugs. She should be OK- her blood work is, but she isn't . She sleeps 16 hours a day, has utterly debilitating dizziness spells and vomits often. She continues to find it very difficult to eat and is losing weight.  My family keeps asking what happens next when there's nothing really much to do? The drs. say difficult to say. Everyone's different. Does anyone have experience with what happens? Thank you for the listening and especially the feeling that there's where to turn. Belle

Re: Bile Duct Cancer stages

Belle... Your doctor is right.  It is difficult to say what will happen next. It also depends on exactly what you mean.  If things do not change she'll become weaker every passing day.  If things do change' like eating, infection stopped,and weight gain she could very well live for months if all is flowing properly and other health issues don't come in to play.  It's very difficult for anyone to suggest what is next.  Only the lord knows for sure. Has she been taking anti-nausea meds regularly? May help with the vomiting. What kind of infection is she taking antbiotics for? Have you consulted with another doctor (specialist)? Does your doctor feel things are at the point were hospice should be considered?  I'm so sorry Belle, I wish I had some positive suggestions or ideas. May you find the strength to deal with this trying and emotional time.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Bile Duct Cancer stages

Jeff, thank you for taking the time to answer my post. She is getting weaker and weaker. I hadn't seen my sister in 4 weeks and her deterioration was incredible. To answer some of the questions, I should begin with the fact that my sister is a special needs adult who was living in a group home with other highly functional yet mentally retarded adults until January, when she was diagnosed.

It is therefore very difficult to "push" her to eat or go out or do anything, for that matter. She understands that she is sick, but not that it is terminal. She is on antibiotics to keep her stents infection free, as well the line they put in to take blood etc. She does take anti-nausea drugs when she is having an off day. That is the interesting thing. One day she can be so ill and dizzy and weak that she literally can't pick her head off the pillow. Other days are somewhat better and she'll go out a bit.

My parents (who are not so young either) are caring for her and we as siblings (large family) are helping by rotating and doing what we can. We just wish we knew...so what's next. Thank you again for your listening eyes, Belle.

Re: Bile Duct Cancer stages

Belle, you know you have friends here who sympathize and understand your situation.

Re: Bile Duct Cancer stages

Belle,
   We are all standing bye, thinking of you and ready to help if we can. This must be so difficult for your family.

Joyce

6 (edited by marions Fri, 04 Jul 2008 18:36:49)

Re: Bile Duct Cancer stages

Belle,
This cancer has shown to be quite unpredictable when progressing.  Some people seem to have intermittent days with vomiting and extreme nausea often times accompanied by pain, to some degree.  I would say to be prepared for anything coming your way. With your parents being elderly it might help to discuss these issues with all and to put in place a plan should the situation warrant outside help.  Would you take your sister to a hospital or are you considering Hospice care? Hospice has been invaluable for most however, occasionally the nurses are not familiar with CC.  You might want to ask some questions beforehand.  I believe for comfort care to be of the utmost importance: no nausea, no pain and the control of vomiting.
My heart goes out to you and your family in this trying time.
Hugs
Marions

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: Bile Duct Cancer stages

Thanks to you all for replying. We do have a plan for when things go from worse to worst, hospice care and all. It's what you were describing, Marion, the fluctuating days that were puzzling us all. Is this the usual pattern? Sometimes OK days and other times terrible? I guess when she has a bad few days, we all get panic stricken--OK this is it. Then bingo--she's going strawberry picking with my other sister and things settle down for a few days again. Once again it's good to know that I can click my mouse a few times and get encouragement and information we need to keep on bumping along.

8 (edited by marions Wed, 25 Jun 2008 10:06:49)

Re: Bile Duct Cancer stages

Belle,
In the case of my husband the vomiting increased significantly over time.  It started with undigested food, then bile, and towards the end his vomit took on the appearance of coffee grounds.  Although, none of the physicians were able to identify the cause of the extreme vomiting it was suspected that possibly, the tumor had invaded the nerve endings of the stomach therefore, not allowing it to contract, anymore.  This was only one theory as there were others, also. Either way, as the vomiting occurred more frequently we then eliminated all oral medication replacing it with suppositories, only.  Belle, you would want to make sure that the Hospice worker is familiar with this cancer by working closely with a physician in order to administer appropriate medication, when needed.  In fact, I have spoken with several Hospice nurses and physicians and none of them were familiar with the end stages of CC when nausea and vomiting became the biggest issue.  You will have to be very vigilant and address this, beforehand.  Going back to 2006, on this site, you will notice of several other caretakers describing the problem of severe nausea with their loved ones.  Is your sister capable of explaining her symptoms to you? 
As you may have noticed this being one of my pet peeves, nausea and vomiting although, there are many others who had received adequate care with this through Hospice and other caretakers.  It varies, greatly. 
Hopefully, your sister continues to have more wonderful days picking strawberries.
Wishing for the best,
Marions

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