I haven't been on this site for a while. My mom has been gone almost a year now.  We had 6 months from her getting sick (we had no idea she was sick until the jaundice started) until she died. Things happened so quickly that we
never had a chance to really soak in what was happening.
Reading this post was like I had written it myself.  I also find myself watching the dvd, in my mind,  of the last couple of days.  I have the same questions about if we did everything we could for her?  Was she scared at the end? 
The "firsts" have been hard (first Mother's Day, Thanksgiving, Christmas) and with the first anniversary approaching I am visiting those last days more frequently. 
I am very relived to hear that I am not the only one that asks the questions and I am looking forward to the day when once again seeing her picture or hearing her name will do nothing but make me smile.

It has been a year now since I first was introduced to the word Cholangiocarcinoma.  How I wish I had never heard the word!
Mom has been gone now for 6 months which is also the time we had with her after the diagnosis.  She was stage IV (like so many) when it was found and although she gave it a good fight, she never seemed to catch a break.

I know that she is in heaven as her faith was very strong, but that doesn't stop me from wondering why.  She was so healthy (at least she seemed that way) and so active. It also scares me to think how life changes in a moment.

I miss you so much mom and will always carry you in my heart!

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(13 replies, posted in General Discussion)

Mom passed away on Tuesday.  I can't believe how fast this progressed for her (6 months from diagnosis).  My siblings and I were talking yesterday wondering if we should have passed on the chemo so (maybe) her time she had would have been better.  I guess we will never know.

My mom was widowed 31 years ago by this monster called cancer.  She raised her family and kept the family together on her own.  She was an amazing women whom I will miss greatly. 

My prayer is that someday we can see the end to this awful disease.

I love you Mom.

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(26 replies, posted in Introductions!)

I read your post and it appears we are going through the same journey at the same time.  My mother was told last week that there is nothing more that can be done.  She is very jaundiced and has ascites.  I haven't decided if the amount of sleeping she has been doing is because of the cancer or the fact that there is nothing more that can be done.

I would also like to know a little more about what to expect.  I am not sure why this is important to me but it is the question that keeps nagging me.  I know that no one can tell us exactly but we really have not been told anything except she will get more and more tired.

I understand about being drained emotionally.  I think that is the hardest part.  I have actually caught myself wishing the end would just come since there is nothing more that can be done.  I need to learn to enjoy the days we have left but I am struggling to do that.  Our only good news is so far, mom has had very little pain and is only on a lose dose pain pill.

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(6 replies, posted in General Discussion)

Mom had another ERCP yesterday and they did replace her stent.  Unfortunately they also found that the tumor had grown and had in fact pushed the old stent out of place.  This time they tried putting in two stents but did tell us that if this doesn't work they will have to go with an external stent.

Mom is doing okay although I don't think the "fog" has cleared enough for her to completely understand everything she was told yesterday.

My question is what should we expect the oncologist to say about another type of chemo.  Mom is 75 and has tried Gem/Cispl and was currently on 5fu/Oxipl because of tumor growth during the initial chemo.  The GI dr said that chemo doesn't stop CC but the hope is to slow the growth.  However how do you measure slowed growth.  There is no way to no how fast it would have grown without chemo.  My point is the chemo hasn't stopped it from growing but how do we know it hasn't slowed it down?  At what point do they stop recommending chemo? Do they ever tell you it is no longer an option?

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(6 replies, posted in General Discussion)

Things seem to be changing with my mom.  We have noticed that the MD's don't seem to be moving as quickly to get her appointments for tests.  We currently were told that it will be a week or two before she can get an appointment for an ERCP. Her bili is climbing again (7.4) and last time this happened they moved so quickly to get it resolved.

I asked if we couldn't move faster because she is getting weaker and I was told that replacing the stent will not bring her strenghth back that is the cancer progressing.  We are also seeing the fluid retention which she has had before but this time it seems to be in her belly also.  Is this ascities?  She tells us that she is in no pain just minor discomfort in her back.

No one has told us that there is nothing more that can be done, but there is no talk of restarting chemo (it was stopped two weeks ago due to a blood infection) and the pace that we are moving seems to have slowed way down.

I wonder if they are giving up.

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(13 replies, posted in General Discussion)

Thank you so much for all your posts.  This is all so new and foreign to us.  I can honestly say that six months ago I had not heard of an external stent or bile duct cancer.  I keep thinking that I am learning so much more than I ever wanted to know.  Thanks again!

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(13 replies, posted in General Discussion)

We are being told that my mom's stent is probably plugged again (2nd time in 5 months) and that she may have to go to an external stent.  The MD's seem to be fighting so hard to avoid this that I am curious why.

Can anyone tell me about their experiences with the external stent?  Are they hard to maintin?  Uncomfortable?  Need replacing as often?
Any information would be helpful in making this choice.

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(3 replies, posted in General Discussion)

My mom is currently being treated with 5FU/Oxipl and it has been very hard on her.  No energy/appetitie and we keep ending up in the ER for fevers and dehydration.  The 6th and 7th day after treatment are the worst.

My question is would the quality of life improve (even if just for a few months) if we stop chemo?  Can you start again once you have stopped? 

I don't know if she is ready to make that decision but would like to know if it is something we should talk about.  If she isn't going to feel and (or maybe feel worse) I would have to rethink bringing it up.

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(8 replies, posted in Introductions!)

Thank you for all your support.  I have been reading this site for several months and the support is one of the reasons I joined.  People mean well but until you go through it you just don't completely understand.

Marion- Mom does have a plastic stent, they talked about metal when they had to change it in two months but decided to try plastic again.  Yes, fluids is one thing she works very hard at.  She struggles with eating but, she has been "making herself eat" and so far has been able to maintain her weight.

She is checking her temp daily, and luckly we did catch the recent infection very early.

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(8 replies, posted in Introductions!)

My mom is 75 and was diagnosised with inoperable cc last August.  This came from out of no where.  She was active and we thought healthy.  She always had a yearly physical and did all the yearly tests.  The whole thing started with the symptoms I have read so much about.  The itching and then the jaundice. The cancer is in her liver, bile duct and gallbladder. 

From the time of diagnosis the doctors moved very quickly.  She had a stent put in within 2 days and within 2 weeks was starting her first round of chemo (gem/cis). She was tolerating this chemo very well with very few side effects.

Unfortunetly in October she started running a temp and we soon found out that the stent was blocked.  This time, things didn't move as fast and by time they replaced the stent her bili was at 13.  This was a hugh set back physically and she is still working to try to regain her strength.  The also discovered that the tumor was growing in the bile duct, although the tumor in the liver remained stable,  so they switched the chemo to 5fu/oxal.

We just completed the 4th treatment of this reg. and will not have another CT until after 6 rounds. This regimate is much harder on her and she does very little daily.  She also had to deal is a blood infection about 3 weeks ago.

We are trying to take things a day at a time, but the hardest part of this for me is the unknown.  Do you plan events for 2 months out - how about 6 months out.  I always feel things are so out of control.