hi,
I've been looking online for a while to get answers for this, but decided to once again come to this board, who seem to know A LOT!
My mom has had 2 chemotherapy  treatments, the last one was Tuesday (5 days ago)
She has had so many issues thus far, even before chemotherapy. Fluid build up in abdomen ( now drained weekly) VERY swollen feet, stent issues, severe fatigue, etc.
But recently in the past two days she is very short of breath even after just a trip to the bathroom. I always jump to worst case scenarios, but I'm wondering if it's the cancer spreading to her lungs, or a side effect from chemo?? Maybe this is common.
Also, I'd love to hear about the progression of this cancer, which is impossible to find online. I realize everyone different but what happens? Spreads to liver, abdomen (she's there) then what? Typically?
Any answers would be greatly appreciated!
Thank you
Amy

Lainy and Marion,
Thank you, you've brought tears to my eyes, but not all of sadness.
Lainy, please forward me the post you were talking about. my email is
amybergstrom@att.net

Marion, my mom, thankfully has all her finances and POA and will in place already, she's always been very organized and did this a year or so ago:)

thanks again.
Amy

It's only been 4 months since I first heard of bile duct cancer when my mom was diagnosed in February, and already we are being told this is the end. (By April they decided it was actually started in the Gallbladder)
Im sick. First we were hopeful for surgery, couldn't do it, then we were hopeful for chemo at least, now after only 1 treatment last week, the oncologist said today moms biirublin is double the norm, she has loss of proteins in her blood, and her bile duct stent might be clogged again (4th time). Said liver is not processing the chemo and can do more harm then good. Also the extreme swelling she continues to have in her abdomen means the cancer is spreading rapidly.
I just can't even believe this, my young, vibrant beautiful active mom????

So I guess Im here for information on what to expect. If no more chemo, what? What happens, how does this horrible process work as I watch my mom die? I cant even believe I'm saying this, to talk to her she sounds fine, not like a women dying of cancer!! What happens? Help, Im helpless an scared.
Thank you
Amy

Hi,
So like many of you my mom has been through the ringer lately:( She actually has gallbladder cancer, but its very similar to bile duct, same stent issues. (she's had 4 replacements of her stent, now has 3 metal ones placed that are doing well so far)

Her biggest issue now is her swollen feet! She does have bad Ascities and gets her belly drained weekly for this, always feels great right after for about 4-5 days. Her feet, however never subside from the swelling and now she has had two episodes where she has fallen and literally can not get up because her feet drag her down like elephant feet! Ive looked all over the internet and keep coming across lymphedema. Not sure if this is what it is, but there is no treatment options!
She keeps her feet up all day, tried lasix, compression socks etc. Nothing helps/Anyone deal with this? Will it ever go away or is this her life now?
She JUST started chemo last week, is on round two today. This issue was happening well before chemo started.
Thank you!!!!! You guys are by far the most knowledgeable group of people out there!!!
Amy

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(5 replies, posted in General Discussion)

My Mom has been dealing with ascities too, she has been drained 3 times already, in her case she needs to do it every 7 days, easy procedure for her and she feels 90% better after.
Amy

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(8 replies, posted in General Discussion)

Gavin
I'm so thankful for your post, mom and I were at the ER and she had her abdomen drained and feels 90% better! It's the first time in a month she has not been nauseas. Frustrating none of the doctors or advice nurses we spoke to mentioned this? Oh well, I'm thankful you did. Now she can have some relaid for a while I hope:)
Amy

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(8 replies, posted in General Discussion)

Thank you both for the reply..Gavin, first Ive heard of ascites, but after looking it up it sounds very likely! Thank you!

It's me again. I have posted several times in the "introductions" area. This truly is the only site I can find that is helpful at all, and where people acytually reply. I am at a loss trying to find help for my mom.
Brief overview. Has advanced, nonresectable gallbladder cancer (up until last week we were always told it was bile duct cancer) that has spread to liver and thousand of mets in her stomach. She has had a hell of time with stents, finally got her 3rd last week and they ended up putting in 3 as the tumor has doubled in size since late February. As of now, she has not began chemo due to all the stent infection/issues. NOW, she is home on flagil and cipro for 10 days to ward of another infection.
Since her last hospital visit 4/27 her stomach is VERY distended, I know this is a sign of the stomach cancer and now her feet are swelling. God, I have so many qustions..she is SO nauseas at all times, she forces herself to eat the tinyst amounts ans still throws up once or twice a day. Is this what happens? How can we help with the nausea? Is the stomach cancer taking over already? Im so confused and dont know where to go for help. She has Kaiser insurance and quit frankly getting anyone to help us without always saying "go to the er" is impossible.
I just want the truth. Is she already starting to decline form the mets in the stomach? Why is she SO sick, nauseas? Will she get feeling better to start chemo? She is absoulutly positive she will do chemo, she has no desire at all to gove up, but not being able to eat and whittling away to nothing is not helping her cause. Is this the normal decline of this cancer? Im lost.
oh, and if you saw my mom youd agree she doesnt even look sick! Even her oncologist was shocked and said he expected to see a sick lady and she looks incredible, not that thats helping:(...

Thank you all for taking the time to reply to me. When you in the hospital do confused you reach out to everyone and I really appreciate the replays.

To catch up, first and foremost all along we have been told mom has bile duct cancer, however, today the oncologist seems very confident it's Gallbladder cancer that has metastisized to the stomach and the original tumor has grown and is in the liver and bike duct now. Do that's horrible news if course.
The decent news is that her white count is normal now and she finally got 3 metal stents in the bile duct just now and I pray this eleviates some if her pain and nausea and she can EAT finally!
Oncology says she needs to recover from this, be able to eat and be infection free so they can attempt chemo.
I'm beside myself with fear of what's to come and find myself praying she can have chemo and it will do somet shrinking if the rumors to let her be here longer feeling good! Man, this is just so wrong:(
Amy

Thanks Kathy
We were just told that her tumor from today's ct scan dhows the tumor is much larger and definetltly in the liver. Not what we wanted to hear of course. They will replace the stent yet again tomorrow morning.
Have you bern on chemo since 09'?
I'm so scared with this news they tell us to not even bother with chemo.
We haven't spoken to her oncologist yet.
Amy

hi, I posted yesterday about my mom having a metal stent placed this Wed. after becoming very sick with her what was infected and clogged plastic one.
Anyway...only 3 days later she's in the ER with colongitis. How can a stent become infected and clogged so quickly? Does anyone else have any similar story's like this? My mom, starting Saturday can't keep anything down, even ice chios. WhTs going on? I've been reading about PTBD catheders and flushes, any experience with thus?
I'm so scared it's more than just a clogged stent. She does have metastasized, unresectable tumer.
Thanks
Amy

They admitted mom and think this brand new stent is infected and blocked, how??? Poor thing just feels constantly naseaus like there's a lump in the back of her throat and she needs to throw up. Tomorrow they'd do another ercp it sounds like??

Hi
My mom had a metal stent placed Wednesday, she needed a new one as she was very sick, vomiting, diarrhea for 2 days.
Anyway we were hoping she'd get relief from this but still has zero appetite, eats tiny bits of food and has to force that down. Today she is very tired, weak, naseaus and has a fever do we're back at the ER
After this stent she was sent home on NO antibiotics which I am beyond confused and angry about and think that's what is causing the fever/infection.has this happened to any one? I'm just writing as we sit here waiting, waiting, waiting fit a dr!!

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(12 replies, posted in Introductions!)

Hi Dina,
I left a reply on Wednesday but see now it never did post. First of all, I am so sorry that we are both living the same nightmare. (Im the one who's mom had the exact same outcome as yours on Tuesday this past week.)
I would never wish anyone to be in the position our family is in.
How is your mom feeling? My mom got discharged today, she is still pretty sore at the incision site, but otherwise feels good. Our next step is Wed the 18th when she has an appointment with a new oncologist in Sacramento. I have no idea what to expect, its just like we have this date in our heads and we are all hoping of course he will give us some wonderful words of wisdom and possibly treatment to prolong her life (STILL can't believe I am saying these words!!)
The one thing I keep hearing is to encourage her to choose quality of life over quantity. I hate it..I don't want her to have to choose, she's so young, happy and full of life with 6 young grandkids who adore her.
Anyway I can go on and on, just so scared and sad..as you know sad Id love to keep in touch, compare notes etc. I hope your holding up OK, I think we are all in denial cause things appear so normal and she feels so normal!!!
Take care of yourself
Amy

i can't believe the unimaginable has happened. I tried so hard to stay positive, and the amount of prayers we have going for her are amazing.
The surgeon came out an hour into what we hoped would be a resection to tell us the cancer is everywhere, nodules all over her stomach. He said take her home and enjoy the next few months. I'm in shock..we just got back from vacation with my mom and she is doing so well, feels great and was so positive this would go well today. She is the youngest most vibrant, loved 70 year old I know. We were told 3-6 months, I just have such a hard time believing this considering how amazing she looks and feels. Any words to prepare me for what's to come?

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(5 replies, posted in Introductions!)

hi, as most of you I don't even know where to start. My healthy, young (70 but one of those you'd think was 60) vibrant mom was diagnosed with cc after a short sickness, jaundice, weight loss in January/February.
We had a story similar to Jessica, who just posted, with my moms surgeon. We thought we were going in to hear about the surgery details knowing very little about cc at the time. He dropped the bomb right away saying surgery is a small possibility, but not sure he could e en do it, and without it she has maybe 2 years. Omg, sick and devastated!! He was so abrupt and seemed so hesitant to encourage surgery, yet said " your healthy and vibrant you might want to try since it's your only real hope."
Side note, I've dealt with surgeons and doctors my 12 year old daughters entire life, she has HLHS and has had 3 open heart surgeries, so I'm nit naive to bedside manner, etc. I get it who cares about their bedside manner if they are excellent surgeons but come on!!!
Ok...so after that day we went on to get 3 other opinions here in the San Francisco bay area, they basically all said the same thing BUT with much more desire, or hope maybe that they could do the surgery successfully. They all agreed our original surgeon ( who is the only one on mom's insurance) is excellent though. So looks like all our hope is on this fait full date of April 10th, as no one can know if the survey is possible until they are actually in there.
So my mom is going into this surgery with more hope, positivity and strength you can imagine, she refuses to give up on the wonderful life she has and her 6 grandkids who adore her!! it's just SO scary that everything depends on this. The surgeon  said if we see him within an hour after surgery starts it's not
A good sign.
All I and hundreds of our friends and family are doing is praying to God every chance we get they can perform the surgery ( knowing it won't be easy after) but worth everything.
We are all taking a family trip to Catalina Island the 5-8th, which was planned for her 70 th birthday in December. After that she heads to surgery. I'm so scared, I dream about it every night. I'm very thankful for this site and all of you sharing your story's. Your amazing and I appreciate you reading this.