Topic: inoperable cholangiocarcinoma--how long can you survive?!

Hi.... glad to have found this site. I'm just learning how to spell this crazy cancer..... My mom has just recovered from a failed surgery (they opened her up and found it had already spread throughout her liver) and started her first round of chemo. I visited with her this weekend and found her to be incredibly tired, no appetite, terribly constipated, short of breath and developing a dry cough. This is way sicker then she's been since January when she started having a dull ache in her side. I can't tell if these are symptoms of the cancer or of the stress of diagnosis or of the chemo. Any thoughts on what is causing what?

Other types of cancer have already killed two of her sisters, so we know how bad it can get. She's been given a poor prognosis--months (though she won't tell me how many.) Can people really survive cholangiocarcinoma for years?!!!? Is it worth it to fight it with chemo, if they say it can't cure anything?! Any hope?

Any feedback welcome, philosophical, practical or otherwise.

Thanks.

Re: inoperable cholangiocarcinoma--how long can you survive?!

Dutch,
Welcome! My husband had failed surgery last July, then 10 mos. of gemzar. He just had a liver resection 1 week ago which came out well. Never give up!
                                                                 Anne

Re: inoperable cholangiocarcinoma--how long can you survive?!

Hi Dutch... I'm glad you found this site also.  It is full of personal first hand experiences that can help you guage  where your Mom is at and what could be of help to and her side effects.

All the sysmtoms you mentioned can be a combination of all sorry too say.  If she has started chemo then probally that is the most likely for most.  Stool sofetener for constipation, lasixtablets as shortness of breath probally implies water around her lungs.  Simple chest x-ray can determine that. But if pnuemonia is expected (usuallysome pain invovled but not always) a ct of lungs would help incase she needs antibiotics.  Dry cough .. hydration is so improtant to keep the cough productive.  Should be drinking plenty of fluids water and weight helping drinks like Ensure or Equate is the same thing if you read the label and less expensive.  If she is really advanced ther is no telling how long survival can be.  I imagine she is quite depressed and with that saying she may not be motivated to deal with her side effects properly. Also the fact that she has witnessed her two sisters pass away from cancer who knows where her thoughts may be headed.  It's an individual choice to fight with the odds greatly against you or accept and let end of life take it's course. Please feel free to read more by clicking on the tabs above cholangiocarcinoma and newly diagnosed.  Awealth of information you will find. I myself have survive this cancer for over 9 years now and shooting for 10 plus or possible remmisssion.  So to answer your questiion long term survival is possible but you have to remember it's so individual for everyone one how they respond , how early it was discovered , wheter is is operable , if other other medical condition exisit, If it was operable and came back.  Nostraight clear cut answers.  Second and third opinions from experienced surgeons have proven to be very beneficial for some cc patients. Please use the search above Jeffg select all post and you will probally see discussions of about most everything you have on your mind.

Dutch I sorry to her about your Mom this CC is very relentless as are other cancers.  I wish your Mom the very best and what ever she decides, taking care of the side effects will help reguardless.  Anti-acid tablets are good to be on hand, Immodium if diarreha starts up, and anit-nausea meds are a must when taking chemo treatments. I also advise plan ahead and take before you need to get full benefit.  I hoped I answered some of your questions but certainly encourage reading more by clicking on the tabs and searching. Love ,comfort and support and not being alone really helps in my opinion.  Local cancer supports groups can be very helpful.

God Bless,
Jeff G.

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

Re: inoperable cholangiocarcinoma--how long can you survive?!

Hey Dutch.....Lee was told he was inoperable as well and had 2 months to live. That was almost 3months ago now. He started chemo in May and is in his second cycle with 16 more treatments to go. The doc is estatic with his progress.  His numbers are "normal" (like yours or mine without cancer) and he is getting stronger and stronger by the day...he was even out driving and hauling in his super 14 yesterday and went flying this morning with a buddy to have breakfast in the pines....although he gets super tired...he's returning to his old self....I guess what I want you to know, like Anne...DON'T GIVE UP! Keep faith and trust in God, stay positive and fight, fight, fight!

Heather

Re: inoperable cholangiocarcinoma--how long can you survive?!

Hi Dutch, my husband Peter was diagnosed April 2007 and given 2-3 months after surgery failed. He is still with me. He works, goes the 9 km's to his work on his bike, plays squash and runs. His spirit is high and happy, since every new day seems a gift. Don't give up hope, maybe your mother has more time than you think now.
Let her eat small, healthy bites: small fruit and also in small but many portions the things she does like. Loss weight pulls her down.
Wish you and your family strength,
Iris.

Re: inoperable cholangiocarcinoma--how long can you survive?!

Hello everyone,  I'm waiting to hear from my surgeon about what the next step is or if he has a plan.  He told me he'd call me, but no call yet. 

First though, Wabals, I'm so glad your husband was able to have the resection.  I was unable to have mine.  I was thinking about him and praying he could have his.  His was supposed to be the day after mine, I believe. 

I have a question.  Now that the surgeon has determined I can't have surgery and I am kind of out there in the wind, (I have an appt. with the oncologist next Monday.)  Should I listen to what the oncologist has to say or should I go for a second opinion now?  And who do I go to?  Another oncologist?  A surgeon?  I've read that many of you have sent your scans and information to other hospitals for second opinions.  I'm just at a loss of what to do next....so confused.

Love and best wishes to all of you,
Sophie

Re: inoperable cholangiocarcinoma--how long can you survive?!

Sophie,
absolutely, gather your records, Ct. scans and everything and anything pertaining to your diagnoses (including physicians notes) and send it to another surgeon or, if possible, two more.  As you may have noticed many have been able to have a resection although, being rejected by someone prior.  Certainly, you would want to rule this out before proceeding onward. 
So glad your fighting spirit is back.
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

8 (edited by JeffG Tue, 15 Jul 2008 18:46:33)

Re: inoperable cholangiocarcinoma--how long can you survive?!

High sophie... In my opinion I would keep your appt. with Your Oncologist and see what advice or plan he may have , but discuss with him you would like a second opinion surgical opinion and also ask about qualifying for a transplant. He may agree with the surgeon. But it is your right for another surgical opinion! but will Insurance cover another one? Did the surgeon mention anything about the galbladder as it's a meance if it also involves CC.  Usually when there is sign of mets surgeon steer away and recommend pallative chemo and radiation treatments.  Sophie I've been considered pallative for 7 of my nine years. The second year when they found mets to my lungs I become 100% pallative.  I have plugged along trial and error and been my own advocate . I still remain hopeful as so many novel treatments have popped up during this time and more still coming.  If your uncomfortable with your Oncologist then by all means you can try another.  If this oncologist has work with you and and got you to a surgeon and surgery exploration it sounds like he is working as hard as he can for you and within his scientific means. If it turns out to try different regimens of chemo then you need to understand that if a chemo is FDA approved and you see that results is taking place with someone else even though not cc specific, like right now my regimen is for colon specific but some studies have shown positive results with patients with cc.  You need to know the Oncologist can prescribe that treatment if he feels it will might work better for you.  Your options are far from over sophie. Keep faith and hope going and advocate for your self.  I can feel your sadness and frustration.   Also remember SSDI application if you should have to give up work.  Then the catch 22, Insurance coverage you'll have to weigh and decide which way to go as if you do give up work how long can you keep it going from work then transfer to Cobra then hopefully that will get you to the 2 year limit before medicaid.  I wish I had more answers to give. I think I've probally said enough for now except really practice meditation and visulization and EFT and ocean waves or white sounds.try to balance your energy toward healing by getting rid of hidden negative emotions. EFT is really becoming quite an amazing thing and is being practice through out the U.S and Europe. Don't hesitate to ask more as you go, as who knows what's around the corner.  I hope I've not scared you with all this stuff, but it is nice to know infor to keep in mind and or try  .

God Bless Ya!
Jeff G.

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

Re: inoperable cholangiocarcinoma--how long can you survive?!

Thank you Jeff and Marion,

I will see the oncologist, Jeff, and I just typed a list of some of your suggestions as questions for the surgeon when he calls.  I am praying he will call before I go to my oncologist on Monday.

I also found out how to get all my scans from City of Hope so I'll do that in the morning. 
For me, I need to be more positive like all of you.  I am so emotional that all I do is cry, and I know that isn't good.  I have always been a person who cries easily, but the past 5 months that's all I do.  I keep thinking, "where do these people get their strength and their joy in each day?"  I want that, but I can't seem to get it.  I live by myself with no family around here.  My niece is 500 miles away, and my daughter 200 miles away.   Both have been wonderful about being with me whenever they can, but they don't have the option to drop everything and move in with me.  They have been wonderful about getting down here as much as they have.    I know I feel sorry for myself too much and make excuses.  Thank you for propping me up, you guys.  Were you guys always so positive from the beginning?  Do you think I can get to the point where I can laugh and enjoy my day?  I want to laugh again instead of staring blankly at people.  I'm sorry.  I'm starting to vent now, and this certainly isn't what people new to the site need to see.  I won't do it again. 

My love and prayers to all of you,
Sophie

Re: inoperable cholangiocarcinoma--how long can you survive?!

Sophie,
I think you may need some medication to take the edge off the anxiety. My doctor gave me some xanax when she found out what I have been going thru with my husband's illness. It works well, especially for sleep. Ask your doctor. Also an antidepressant may help. I am an RN with a masters, and I am a believer in meds when necessary. It does not mean you are weak-just human.
                           Anne

Re: inoperable cholangiocarcinoma--how long can you survive?!

Sophie,
what you are experiencing now is no different for you then it is for everyone else.  It is a major disappointment and you are bound to feel discouraged making it so alright for you to vent - this is the place to do so.  I am sure for others to be telling you plenty of their own stories which will not differ much from yours.  Also, we have the good fortune of having Dr. Giles on this site whom you might want to send a note to.   In fact, when my husband was diagnosed everyone in my family talked to a therapist, individually.  We needed to share our emotions and it had to be someone we felt absolutely safe with. Sophie, reach out.  We are here and possibly there are many more people out there wanting to be of help to you. Sometimes, people don't know what to say:  so, you might have to express some of your wishes to others.
Hoping for you to get some rest and awaiting to hear all about the surgeon's report.
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: inoperable cholangiocarcinoma--how long can you survive?!

Sophie, dittoes what everyone else had to say.  I know it's hard and frustrating to go through what you are going through, especially when you have to do it alone.  I don't know if you have a church group in your community that may be able to help and encourage you or not.  I know my church has been extremely helpful in very practical ways, like giving money to help with my financial obligations.  Sophie, people really do want to help, and are compassionate when you honestly express your needs and fears to them. 
Plus, you always have us.  We're just a click away.
God bless you,
Lisa

Re: inoperable cholangiocarcinoma--how long can you survive?!

I've been in your situation being at 23 the sole caregiver to my mother in the same situation as you they opened her and saw how it was and closed her right back up. She did extremely well with a very positive attitude and told everyone she would fight till her last breath which she did. We just lost her on 7/7/08, 13 months after her diagnosis. The disease works in every case differently and how much of a will the person has. At the end we were told she was alive on pure will alone. She went from being "healthy" (as healthy as you can be with this disease) to just weak. A lot has to do with getting doctors who care. When she came here to FL after recieving initial treatment at sloan kettering there was a big difference her doctors wrote her off and she took that attitude thats when things went downhill. Find a doctor who cares about your mothers outcome that is half the battle, the other half is making sure she keeps a positive attitude and the people around her. Dwelling on the statistics and what not won't help you or her it will drive you nuts if you do. In the end i cared for her the best i could, I was her 24 hour nurse and I don't have a degree in nursing. You just give her all the love in the world and don't get frustrated, it takes a toll on you but stay strong for her. In our home we survive on thinking the most positive we can, and till the end we assured her no matter what she would be ok whether it here or somewhere else

Re: inoperable cholangiocarcinoma--how long can you survive?!

My mother had surgery in January 2007 and all gross cancer was removed but it had spread pretty much everywhere. She is 66 and has heart problems and it was very difficult for her to bounce back from the surgery, it just took her legs out from under her and her decline has been pretty steady since then. Because it took so long for her to recover from the surgery, further treatment was delayed for approx. 3 months. She tried Xeloda in March/April and 3 weeks of radiation in May but it was brutal for her and, in hindsight, I think photodynamic therapy (PDT) might have been a better option for her because the side effects seem minimal compared to chemo and radiation. There are some posts here on PDT and an article in the Medical Updates section, here is the outside link:

http://www.eurekalert.org/pub_releases/ … 041508.php

Patty

15 (edited by Lisa Sat, 19 Jul 2008 08:14:14)

Re: inoperable cholangiocarcinoma--how long can you survive?!

Thanks for posting that link, Patty.  I will print it out and ask my doctor about it next week.

To me it seems that one of the big differences between long term survivors and those who succumb quickly is age.  Jeff has lived with this for nearly a decade, so he was in his forties (I think) when he was first diagnosed.

I'm 45, and have survived for a year now; the past 7 months in fairly good health, with no "metanasties" so far.

This cancer is so different for everyone.  Jeff has the most information and best advise on the site because he has been fighting it for so long.

Re: inoperable cholangiocarcinoma--how long can you survive?!

Hi Lisa,
Thank You for your so gracious and kind compliment.  However, my knowledge of CC has got to be credited to this Web Site and all of it's members input including you. Patients and Caregivers alike have collectively provided information from research and personal experiences that has accumulated a wealth of information for us all to share.  Thanks for recognizing my tenure in battling this disease, I hope to keep on rolling but you just never know with CC.  As far as age goes, in my opinion it's more to do with overall health than age.  Although it is scientific fact that life's aging process can hamper or slow recovery of major medical problems, I personally feel someone of age 80 can fight this disease as well as someone in their 40's.  I keep returning to the positive approach, as a key factor but even that is just one of so many variables.  Hope is always in the air! whether or not we can benefit from it remains to be seen or possibly not.  There is no simple right or wrong answers; this world has grown  in to a very complexed enviornment.  Best wishes to all!
God Bless,
Jeff G.

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

Re: inoperable cholangiocarcinoma--how long can you survive?!

You're right, Jeff, your overall health is so important in fighting this disease.  I took my health for granted all those years.  Now I'm struggling to eat right and excercise the way I should because it never seemed all that important before.

Jeff, you're the man!