Topic: Sister has Stage IV Bile Duct Cancer w/Metastasis

My sister was diagnosed about a month ago with Bile Duct Cancer - Stage IV and it has metastasized to her rib, hip and T5 in her spine and lymph nodes.  She is 41.  I know it's bad just from the diagnosis but has anyone had any experience or know anyone that has been diagnosed with it this bad?  She seemed perfectly healthy 2 months ago and then started having pains in her ribs.  They thought it was shingles at first and then found a tumor on her liver.

She heads to the mayo clinic on Monday.  If they have nothing for her she will start chemo.  Surgery is not an option they have told her. 

I am really scared and just looking for any advice or knowledge that anyone has.  Thanks

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland....  Sorry to read the news of your sister.  For starters your headed the right hospital to see what can be done.  I was not originally diagnosis that advanced.  Originally it was gallbladder and one lobe of liver. Both were resected in 1999.  Since then it has mets back to remaining lobe of liver, both lungs, 10th rib, soft tissuse of t12, left shoulder, lymph nodes of left arm and soft tissue adjacent my esophagus.  Other than surgery I didn't do nothing until about 3-31/2 years ago.  I started trying in my mind about every type of chemo considered possible to reduce or slow down growth.  I've done  lots of praying and also meditation/visualization.  I've had radiation straight to the liver and the t-12 area.  Just finished another round of chemo last week and today my blood work is anemic and nutrophenic.  I'm taking antibiotics and filgratism subcutaneous injections but slow return on bone marrow this time (WBC,RBC,HBL,Platlets).  I'll most likely be looking and asking for trying some immunotheraphy next.  As only way to properly retore my bone marrow is a bone marrow transplant and that take months if not years to get back up to speed.  So your question is yes, with a big ray of hope that your sister can fight this disease for years to come with appropriate treatment.  Bumpy road many a days but you have to focus on loved ones and understand a positive mind will take you a long ways.  If she is unable to work Stage four will qualify her for SSDI.  However if she can still work and has medical insurance get the ball rolling before you apply as as without medical insurance it is difficult geting things done with out paying up front or making a contracted budget with whatever possible. Ther is a whole array of information on this site and I welcome you to please use any and all links.  Ask any and all questions that may pop up as many member have a wealth of experience and ready to suggest.  This disease is pretty unprdictable on it's progression; could be slow or could be quickly.  I wish you and your sister the best outcome possible.  Maybe a combination of chemo and radiation to start of with.  I have found radiation to have helped me tremendously with eliminating some pain.  I had 3-d IMRT at my t-12 area as soft tissuse tumor was pressing on my spinal nerve roots and causing unbelievable pain to my side and lower back.  It worked great for me. Over a year ago and no pain to that area.  There are many radiation techniques that couls be tried. One thing to remember it is different for everyone due to locations and size. Well, I'm rambling again, please check out the sight .It's full of infor.

God Bless,
Jeff G,

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

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

From what I can recall from the awful doctor's visit with my sister that day, She said that radiation was also not an option due to it being toxic with chemo and that her bones were unstable. 

I do appreciate your response and your words of hope.  I am sure as you know any positive comments are welcome.  She is my very best friend and I have to do whatever I can to keep her with me as long as I can.  I feel so desperate. 

Again, thank you so very much!

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tonland, One more thing is don't take no for and answer alway get second third or more opinions as some doctors are more willing than others to try for something.
Jeff G.

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

5 (edited by marions Fri, 28 Mar 2008 07:58:10)

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tonland,
I would like to encourage you as Jeff already has for you to contact other physicians familiar with this cancer as opinions in re: to treatment vary, widely.  I believe this cancer warrants 2nd, 3th, or even 4th opinions. 
It is wonderful to see your advocating for your sister in the manner you do.
Wishing and hoping 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

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tonland - My husband's is also stage 4 and is very similar to your sister.  He is currently getting radiation to spots on his skull, C2, T3, T5, T7, T10, T12, plus his right hip and two spots in his lungs that just happen to be on top of blood vessles.  His doctors have stopped his chemo treatments for now as they felt is was just too big of a risk.  The radiation has decreased his pain so much that we are glad we proceeded with the radiation treatments.  We are hopeful that once these treatments are complete he will be able to go back on chemo quickly.  Hang in there, I will keep both you and your sister in my thoughts. - Colleen

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

My sister just got back from the Mayo Clinic and after her tests they sent her home and told her to start her Chemo treatments that K.U. Medical suggested.  How long can somebody live with this?  Any advice?

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland-my husband was also seen at Mayo and sent home to have chemo at the local cancer center.  That was a little over a year ago.  He had treatment locally and when that was not working (but they were continuing the same drugs anyway) and now he is being treated at the Cancer Treatment Center of America.  If your sister has a ppo insurance we highly recommend CTCA as their hopeful philosophy work with many modalities to add to longevity and comfort and in many cases a cure.  While we have no false hope, we do have hope.  Patrice

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

My sister's has spread to her bones and lymph nodes?  Was your husband the same way?  How is his health today?  Thanks for responding.

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland-Dave's cancer has only spread to his liver but he has several very large tumors.  Bone scan is clear. His health is at best stable.  Fatigue is his biggest problem.  He sleeps many hours a day but he tries to sleep while I am at work so that we have quality time together in the evenings.  He is on FUDR and Vinblastin right now trying to shrink the liver tumors so that he can have intrahepatic chemo or perhaps sirspheres. I try to keep positive and support Dave in whatever way I can.  I will keep you and your sister in my thoughts.  Patrice

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

My sister started her chemo yesterday with gemzar and xeloda.  She is really scared.  She also found out since her last cat scan it has now spread to her ovaries.  That was like in the last 2 to 3 weeks.  So now it's in her liver, rib and hip bone, her spine, lymph nodes and now her ovaries.  This sucks!  I knew it was aggressive but had no idea it could just keep spreading that fast. 

I'm trying to be positive and hope that this chemo works.  But it's really hard.

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland... I'm glad to hear that your sister has started chemo.  I'm sorry to hear that it is spreading so fast.  I really hope this chemo will slow things down for her.  I can imagine how scared she is right now and you as well.  I know it is hard to be positive and have hope.  Like most of us ,hope is the one thing we have to hold on to.  We have to remain positive and pray and hope for the best outcome possible. Tanoland, hope is about all any of us have to hold on to with this disease.  Your going to have to be strong my friend and love and support Shirley as much as you possibally can.  Only time will tell now. I wish I had a magic wand.  Please tell Shirley she has all our love and prayers of support with a whole bunch of hope things will turn around for her.

God Bless You Both!
Jeff G.

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

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland, I'm sure you and your sister must be so scared right now. As Jeff said, it's a good thing she started chemo because if the disease is aggressive, chemo is the thing that may slow it down or put it in its place.  You're doing the best thing in the world by being there for your sister with your love and support. I'm sure she appreciates having such a great sister by her side. I hope everything turns out okay.
Much hugs,
Joyce

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

I am grateful for finding this site.  It's nice to have people to give you advice and understand where you are coming from.  Before she was diagnosed with this I had never heard of this disease before.  And now it has consumed our lives. 

Thank you guys for your support.

15 (edited by marions Tue, 15 Apr 2008 22:09:25)

Re: Sister has Stage IV Bile Duct Cancer w/Metastasis

Tanoland,
you are so right as most if not all of us never had never heard of CC before it touched our life.  We had to learn "fast" just as you are having to do.  Best wishes and hopeful thoughts coming your way.
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