Hi LadyLinden,

My mom was at University of Chicago on the trial as well. I have heard that the side effects can be quite rough, but she was able to handle it all fairly well. She was in good shape to start with, she was a strong 54 year old! She had fatigue, mouth sores (get a prescription rinse if they pop up!), leg cramps and some thinning of the hair. Her first treatment was brutal, I recall that the anti-nausea meds had only been prescribed for days 1-3 of chemo. After the first treatment, she stayed on anti-nausea meds through day 5 and it went much smoother. We also did the treatments Mon-Wed so she was not connected to the pump during the weekends. We were able to see continued shrinkage for quite some time and the treatment gave us precious time together. I think it is important to always be your own advocate.... ask all the questions, question everything you do not understand and always speak up. My mom was able to stay with us as long as she did because she was a tremendous fighter..... I wish you much success and good health to come!

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(10 replies, posted in General Discussion)

Thank you Marion, your kind words on a particularly rough day and night offer my little sister and me such comfort. The three of us are extremely close, and even when she can't tell me, out can't hear me, I appreciate knowing she feels our love. I know I am not the first to walk this road, and unfortunately not the last, but your thoughtful message make the night a little more bearable,  thank you.

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(10 replies, posted in General Discussion)

Thanks for your suggestions. We will be coming home tomorrow and have set up hospice help. All this is pretty foreign territory as I have been fortunate enough to not have anyone very close to me pass away from cancer.  My poor 55 yo mom is the first. I have asked the doc to lower her morphine as she was barely responsive today. Her ascites continues to build and I am not sure how that will be treated as we progress. Has anyone dealt with that with a loved one nearing the end? I despise this cancer for hurting my sweet mother and I'm terrified of life without just.  Thanks for listening, Kristina

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(10 replies, posted in General Discussion)

Hey all, 6 weeks of radiation did nada to the cancer, or help moms consistent pain. She came to er with dehydration and a swollen stomach. Four liters of water from ascites drained and a draining tube for stomach bile that makes her vomit.... Now a bit more comfortable. The onc wants to put in a gj pump (sp?) so we can remove tube from nose. I guess my question is how do I get nutrition into her when it will just drain away??? I would hate for her to continue to be malnourished, especially since she finally wants to eat. Can I time the drain to allow for some digestion? The cancer has now spread to abdominal lining and blocking bit of stomach, hence the drain. Chemo is not recommended as she is too weak. I was hoping gem/cis could still be a possibility. Having a hard time accepting what is coming, was hoping to get her some strength to give the chemo a go. She's been such a fighter. Any advice is appreciated.

Thanks, Kristina

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(8 replies, posted in General Discussion)

Hey, my mom currently has four metal stents- she had one put in a year ago, one in November, and 2 more in January (that are one on top of another). She never complained of any pain, just some abdominal discomfort and a little "tugging" feeling when she would take a deep breath at times. She also has the occasional blood infection from them...so that results in a fever at first, followed by a few days in the hospital with iv antibiotics and then all better! Good luck to you!

She has taken Zofran, Compazine and Ativan. It is not so much nausea that is the issue- she tends to vomit on her own without any nausea.

Thanks for your advice Pamela, mom had the 5-fu while she was on the Folfirinox regimine. She tolerated it all really well. We try to keep her grazing, and all the anti-nausea meds, but we have not found the trick this time around.

I follow your posts on your daughter and wanted to wish her the best on her upcoming surgery- praying it all goes smoothly!

Hey all-

Mom recently changed her plan from Folfirinox (after some additional mets popped up) to a 6 week radiation and Xeloda combo. While on chemo, she rarely vomited. Yet as soon as radiation started she has been vomiting at least once a day (despite taking her Zofran, Compazine regularly). She has lost a lot of weight and has no appetite. The radiation nurse said she believes the Xeloda is causing her to vomit. Has anyone else had experience with this? I am not sure why she was able to maintain her weight, energy with the tough chemo.... but vomiting and having such a rough time from the small Xeloda amount. Any help is appreciated.

Hope this message frind you and your loved ones well.
Thank you,
Kristina

Hey Rebecca,

You have gotten wonderful advice and feedback already.... I just wanted to chime in that we are also at University of Chicago with my mom (55 years old)and she responded really well to the clinical trial with Dr. Catenacci. She was on Folfirinox since June, 2012. It was rough and there were many ups and downs but she is still fighting, but I think it is a good place to start. Good luck to your family!

Kristina

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(2 replies, posted in General Discussion)

Thanks for your input Marion! It seems they believe the liver is causing her pain and they are trying to figure out if radiation to the liver would now be more appropriate- I guess it is scary to think of just leaving the spinal mets alone for now- but hopefully they know best. All the best to you!

Hey all,
Mom has gone through 11 rounds of Folfirinox (9 of which were with oxi before they took her off) and her tumor has been shrinking consistently by the looks of her ct scans since being diagnosed in 4/2012. She's been having some nasty back pain and when she ended up in the hospital with an infection they did an MRI that showed a couple mets on her spine. It looks like our next steps are a short course of radiation and then gem/cis. Hope it works! I have been looking at other clinical trials, but the onc feels strongly that this is the route to follow. Does anyone else have experience with spine mets after continued shrinkage? Thanks for your help and you and your loved ones are in my daily prayers.

Hi all! We received the first scan results for my mom (age 54) this past weekend- 30% shrinkage!!! and no additional mets anywhere (when she was diagnosed it was scattered across the surface of her liver, but they could not see it on a CT, so not sure if that is still there now).

I am grateful to God for the reduction in her tumor and she is handling the folfirinox pretty well. I guess I know that things can go south at any moment, so while I am trying to enjoy the good news.... I am already worrying about what looms ahead. The onc said he would not consider looking for a surgical opinion until 6 months of chemo show similar results. I understand his opinion, but has anyone else been in this situation? Should I be looking for another surgical opinion on my own? I am her oldest daughter and a lot of the research/info has been my responsibility- just wanted to see what someone over here thinks.

p/s We were able to take a short pilgramage to Holy Hill in Wisconsin.... and prayers were said for all the people I have read about here and their families.... I think of you often.

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(8 replies, posted in General Discussion)

LeeAnn,

I hope the gem/cis combo does wonders for you! I will keep you in my prayers. I think irinotecan is the toughest one on my my mom- it is hard to tell which drugs have which effects, but I feel like she starts to get worse once that bag goes in her. I hope your port procedure and first treatment went well. We go in on Mondays (since she is hooked up to the pump, we wanted to have her weekends free to do things) and we have the same oncologist! It is a bit of a ride for us to U of C (we are a bit north) but so far, no complaints about him. The nurses in the treatment suite are very nice. We get the results from her first scan this Friday. It has been a really tough week this past week, but I hope for good things this week.

Keep me updated on yourself- I wish you all the best to come...

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(8 replies, posted in General Discussion)

Hi LeeAnn,

My mom (age 54) has started the Folfirinox trial at University of Chicago this summer. I don't believe we have had any problems with our insurance (BCBS). She has just received her 4th treatment and we will be doing our first scans on Monday. Mom had to get the port, which was a quick procedure- but she still does not like it at all. The first treatment was the absolute worst, but the ones after have been pretty good. After reading on here and elsewhere about people's reactions, I have seen that everybody is different. Her main side effects are tiredness, mouth sores (make sure to get a prescription rinse to prevent and help when they pop up), leg cramps and her hair has started thinning some. Many people have severe diarrhea, luckily she pops an Immodium on the first episode and it subsides quickly. She had missed a couple treatment days due to low white blood cell count and last week she had developed a rare infection from the biliary tree, so she was hospitalized for a bit to make sure things were ok. Some advice I can offer, the doc had prescribed anti-nausea meds on days 1-3 of chemo (until the 5FU pump was disconnected) but we found taking the Zofran and other meds through day 5 was much better for her (I think that is what made the 1st treatment so crappy!). She has been eating great and her energy level is through the roof- she takes her pump and goes on her daily power walks nearly every day. She's a total warrior!

I wish you all the best and pray things go well for you.

Kristina

Hi all! I have been to this site so many times and I have learned so much from all the information here. It is wonderful that this site exists, as it is great help to clueless people like myself.

So here's the rundown: My 54-year old mom was diagnosed in April, 2012. Like many here, she had slight abdominal discomfort..... fast forward to two weeks later, we had our diagnosis of stage 4 gallbladder cancer/ cholangiocarcinoma (which came first for sure, who knows). The surgeon found that there were tumors in her gallbladder, blocking her bile duct and mets across the surface of her liver. No surgery, chemo forever, thats it. It felt, and still feels, like the world crashed down among us all. She had a metal stent put in, and thank God we have had no problems with it since. We were somehow able to get her bili levels down enough to be get into a clinical trial at University of Chicago. She had her first treatment of Folfirinox this past weekend. It has taken quite a number on her and it is extremely hard to see my strong mom being thrown down so hard. I hate it.

I refuse to accept that this will be her life from now on.... maybe I am naive, but if I do not believe in her, I cannot expect anyone else to either. I have scoured all your messages here and have sent her records to several doctors mentioned on this site.... no other treatment options have been suggested for her. I have researched like crazy and have her taking numerous supplements, powders, smoothies, juices, anything to get some nutrition in her and help her body stay strong when all it wants to do is throw up everything I put in her. We are praying as a family, seeing priests, herbalogists and I am taking her to an Amish healer I read about. I am so desperate for anything that could help her.

Any suggestions are appreciated. Any recommendations on diet, supplements, care providers in Chicago, etc. are welcome. Knowledge is power and I want to do everything I can for the woman that has done so much for our family.

Thank you for keeping this site active for all the people out there who so desperately need it. Those who are fighting this terrible disease and those of you who unconditionally love and take care of them... you are all in my prayers.