Dear sunshinecaregiver,
When my family member had those symptoms the stents were blocked and he was becoming septic from cholangitis... .so the blood work should reveal if that is the case and it can be treated successfully with antibiotics.  He had taken a train trip to see his son and  we had noticed some changes in behavior prior to his leaving. They got worse when he arrived in Wisconsin but his son  didn't take him to ER as advised while he was there.  Sepsis set in and he was lucky to  have made it out of the ICU but unbeknownst to us this had been coming on for 10-14 days.  We now know to check for fever, disorientation and other signs of infection.  Low doses of Gemzar and Cisplatin was very well tolerated in our case and bought  him a year of quality time.  I wish you and your mom the best.  Take care and you have a great source of information and support from Marions and others on this site.

Hi Andie:  I am in a similar situation with my daughter's dad Rick who is 13 months post diagnosis of cholangiocarcinoma (extrahepatic) stage 4 metastasized to liver with multiple inoperable tumors.    He did remarkably well on palliative doses of gemzar and cisplastin for the first eleven months.  He had three metal stents placed and they can do no more nor can they be removed.  The next step if necessary is external drainage. My Rick  began to be resistant to initial chemo so second line chemo was given (5FU) with no response...then third line CPT 11 was given and initially we thought it might be holding off the growth but his C19 doubled to 11,000 last week.  I spoke today with a radiation oncologist who is part of our church and he said he had spoken with staff at CMPC in San Francisco about using IMRT around the stents to help with stopping tumor growth and subsequent blockage.  I realize your dad has external drainage but look at Gavin's post on IMRT on June 28th and read that article.  It is worth the shot in the dark...I understand some of what you are going through and wish you and your dad the best. Keep searching and researching... Take care, Gaye

P.S. If anyone has any feedback or ideas on the above post regarding my Rick...I would love to hear from you.  He is 13 months out now from diagnosis and they gave him 2 months initially.  We have been blessed and he has had great medical care, support and a positive, fighting spirit and faith.  Thinking of all of you facing this difficult journey.  God Bless! Hello Marion!!

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(80 replies, posted in General Discussion)

Rick,
Thank you so much for how amazing you are to share your journey with all of us.
I hope you know how helpful and hopeful it is to read your posts.  My daughter's dad had very similar symptoms in the last month that turned out to be cholangitis and he ignored the chills for several weeks...then while visiting his son in Wisconsin (we are in California)...he became septic and the massive fluids and antibiotics given there gratefully did the job and he recovered...I thought Lisa's idea was a really good one to be proactive and not wait...we have learned our lesson!!  My daughter's dad is also named Rick and has almost identical course as yours but now is in the stage of chemo not being effective...his C19 has doubled and I was just looking at the site for ideas on where we could go next...I don't know that he meets the criteria for your treatment but I will research it further.  You truly are our pioneer and I, among others, am very grateful for all that you have shared.  Keep fighting and our family's prayers are with you!! I will look forward to your posts and thank everyone on this site for your encouragement and sharing your journey.
Gaye

p.s. to prior post...the comment "they said two months and contact Hospice" was when he was first diagnosed in Sept 09....Gaye

Marions: Perhaps I should post this on the general Board but my daughter's (19) dad is 11 months post diagnosis Cholangio stage IV metastasized to liver at diagnosis with four tumors (inoperable)..He was treated with palliative chemo...
cisplatin and gemzar with pretty good results up until 2 weeks ago when C-19s were in the 2100's and Dr. felt chemo was no longer working...switched him to 5 FU with Levo???  3 x's per month.  After 2 treatments his C19 has doubled to 4354...they see a new spot on his L4....he is a fighter...isn't ready to go and has shocked them with 11 months considering the severity when he was diagnosed...They said two months and to contact Hospice!! He has three stents placed (one 3 weeks ago) and his ALKP is really down from 900's to 354...so that is good...(but this is the last stent possible..they are metal) his CEA is up in 360's.  What do you think...are there any other options you would consider or have heard may help him have more quality time...or successful clinical trials..(compassionate use)...we are at CMPC San Francisco and of course will talk with oncologist but really want honest feedback from a member. He is not in pain, praise God.  He is losing weight for the first time...10 lbs in three weeks and appetite is less than normal...Does this sound like end stage...Please share your honest thoughts and appraisals...I want to be informed but realistic and prepared to help all of us.  God Bless and thank you for any advice...Gaye

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(30 replies, posted in General Discussion)

Hi Lisa,
I am so glad you were able to have the metal stent.  My husband Rick had one put in right after diagnosis and he was sore for a few days with an occasional pain but it passed with no further problems...Thinking of you and hoping you are pain free soon.  Keep healing!!!

Gaye

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(284 replies, posted in Introductions!)

Margaret,
What a difficult time...I will keep you, your husband and family in
prayer..will look you up on facebook.  Bless you...Gaye

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(1 replies, posted in General Discussion)

Hello everyone:  Happy New Year to all of you!!!....just to update you and review .. my husband Rick age 64 was diagnosed with stage IV cholangiocarcinoma metastasized to his liver Sept 09...several tumors...inoperable...He is being treated at Cal Pacific...San Francisco, Ca.  His C19 was 1999 at diagnosis and after five gemzar/cisplastin combo treatments every other week his C19 dropped to 1260 which was very encouraging...then his  creatinine level rose to 1.7 and they suspected that it was a side effect of cisplastin so they have been doing only gemzar since 12/01/09 to avoid kidney damage.   By 12/30/09 his C19 shot back up to 1490...Today the oncologist recommended he start Tarceva once per day for two weeks in addition to  gemzar 3 weeks on and 1 week off and see how things go.  He also has type 2 diabetes and his blood sugars have been all over the place so they are giving him once per day insulin to try and stabilize that...it's hard to know what is causing the rise in the creatinine levels...chemo...diabetes..combo...  Does anyone have experience with Tarceva as it has looked as though gemzar/cisplastin is the gold standard of treatment and Tarceva is  primarily for lung pancreatic cancer....has it been helpful for anyone with similar diagnosis...Thank you for your response...You are a wonderful source of information and guidance...God bless you!

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(22 replies, posted in Introductions!)

Thank you to everyone who answered...have been out of town for awhile... I really appreciate your responses...The referral to Dr. Venook will be really helpful....Thank you Marions!!!  God bless all of you...I will keep you posted...it's so nice to know there are people to reach out to through all of this... Take care everyone!!!

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(22 replies, posted in Introductions!)

Hello Everyone:  I am new to the forum and my 18 year old daughter's father (my ex-husband and friend)  has been diagnosed with stage IV cholangiocarcinoma..It has metastasized to his liver and is so advanced they are doing palliative chemo only.. of cisplastin and gemzar....After the ERCP they didn't see any cancer in the lymph nodes or pancreas but multiple inoperable tumors in the liver and severe obstructive tumor in the common bile duct. He has had four treatments and we are awaiting a recent C-19 tumor marker test to see if his numbers are coming down...they were 1919 to begin with and dropped a bit after the stent was placed.  We have been told if they don't see a drop in the C-19 marker that they will recommend he stop treatment and contact hospice. He also has a CEA of 325. He has a few other co-morbidity factors , type II diabetes, peripheral artery disease, and severe aortic stenosis.  I can't say enough about the quality of care he received at California Pacific Medical Center in San Francisco that has a top notch liver program...but we have not had a second opinion.  A member of my church is a radiation oncologist and said if he starts having pain as the cancer progresses...they can do radiation.  That is a relief as I have promised him I would do whatever I could to alleviate any suffering. 
So here are my questions:  Would you recommend a second opinion at M.D. Anderson or Mayo Clinic or someplace else??
If the chemo isn't working any idea of how long he may last...Dr. says could be weeks to months but I have heard different.  His appetite is good and he is having minimal pain.
Is a pet scan necessary at this point to see where else it is in body or is that not necessary?
Are there any trials that look promising to someone in this situation?
Finally, I wanted to mention that he had been taking Byetta for the diabetes since 2006 to end of 2008 with increasing  stomach problems and nausea...but stayed on it because he didn't want to gain the weight back that he had lost...
I now see that they have made the manufacturers post a pancreatitis warning..
and I wonder if this factored into his bile duct cancer!
Thank you all for any feedback that you could give us...Feels like time is running out...God bless all of you and thank you for this site.