savingrace

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.

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

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

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

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.