Topic: My mom has been newly diagnosed with CC :' (

Hello everyone!  I must first say thank you to everyone for their posts to the website.  I spend a lot of time looking over the different discussions, questions and answers and can't get enough to try to help my mom.  To start, my beautiful mommy is 69, will turn 70 on Aug 24th.  She had her gallbladder removed in Aug 2011, had been having horrible abd pain, and at that time we were told she had Gallbladder cancer from the biopsy.  Her ONC then referred her to University Hospital in San Antonio where she received a partial liver resection where the gallbladder sat (gallbladder fossa), to ensure that the cancer was completely gone.  The biopsy results from that were negative-whew and Thank God!!  She had been fine since then, no pain, good appetite.  But then, on a visit to her ONC in June, noticed that she had dropped 5lbs, which she attributed to just not being very hungry...which we thought may have been normal since she had a recent endoscopy (which came back negative), thus made her lose her appetite for a bit.  Then the week after July 4th, she developed a rash, which spread all over her body, her urine became dark, and finally had to be admitted to ER from abdominal pain and turning jaundiced.  That's when we were told that her main bile duct was dialated and the biopsy came back as cancer. We were in shock, disbelief, needless to say the emotional rollercoaster we were on last year returned.  How could this happen...again???  Since then, she has had a metal stent placed which helped her jaundice, she still has some abdominal pain, but the pain pills she's been given help with that thus far.  Her NEW ONC (we will not be returning to her previous for personal reasons) suggests pallative chemo, since she is Stage IV, would be given Cisplatin/Gemzar.  The cancer appears to be inside the main bile duct, no spread to her liver or kidneys, but unfortunately the last CT Chest/Abd/Pel from University in July showed nodules in her chest, which they think may be mets but they are too small to biopsy at this time.  I'm so scared for my mom, we all are..she's never undergone chemo and she herself is nervous (with good reason).  I've read over and over about this type of chemo combo, some good, some bad, but any information you can provide would be very much appreciated.  Is there anyone out there that has been in this same situation with their CC, or perhaps similar, and is still here, alive and well?  We don't want to lose our angel..we have been changing her diet, as well, but since she doesn't have an appetite most days, find that if she gets an appetite for something it is better than nothing at all.  The oncologist says that if she does the chemo might give her 1-2 years, but if not, then possibly a year or less....my heart is breaking just writing this, but my family and I will do what we need to in order to help her be strong.   Thank you again....to everyone on this site and fighting this horrible cancer...my thoughts and prayers are with you too!

The most beautiful sight I've ever seen is my mommy's love for her family.....the safest place in the world is in my daddy's arms...

Re: My mom has been newly diagnosed with CC :' (

Dear Mommysgirl, welcome to our extraordinary family but sorry you had to join us. I am so very sorry for this horrible journey your Mom has been on and sometimes the diagnosis for CC takes longer, too long. What I quesion is, was nothing done between the surgery and June? Even LABS? I think you did the right thing going for another opinion but here is what I would ask. My husband was a 5 1/2 year survivor of a Whipple and at the end the ONC wanted to do Palliative Chemo and Teddy opted out after hearing it would only buy him a month. He wanted quality time over quantity, some quality/quantity, huh?
To chemo or not is a very personal decision and the toughest one there is.
As for diet it is much better for Mom to graze during the day then 3 bigger meals. Teddy loved the Carnation Instant Vanilla Breakfast and I would blend in a banana. This can take the place of a whole meal as it is full of nutrition. I also made meals that were more comfort food. Homemade soups chock full of chicken, jello, pasta etc.
The best way to keep Mom strong is for all of you to be strong as she will draw on that strength. You never know how strong you are until "strong" is the only choice you have! Please keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom has been newly diagnosed with CC :' (

Hi mommysgirl,

My daughter has CC. She did not have similar things happen as with your Mom, but she was on Gem/Cis and 5-FU for her first chemo. She handled all of these chemos very well. She was only tired for a few days and had some times where platelets dropped to low. What I have found out is that every chemo reacts differently with every person. Some work for some and some don't. Some make some sick and some do not. You never know until you try them. I mainly wanted to tell you that I think it is great you are taking such an active role in caring for your Mom. I wish you both all the best and I hope you come back with questions and comments! Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My mom has been newly diagnosed with CC :' (

Hello.  My mom had a repeat CT in Jan 2012 which was negative and PET in Feb which showed an area of concern in esophagus/stomach.  Endoscopy results showed negative for cancer at that time also.  Which is why everything seems so overwhelming, it all happened so fast it seems.  I'll try the banana in the Carnation, perhaps she will like that.  She had been trying to stay away from sugars, but that should hopefully be fine.  Thank you for your reply and I am sincerely sorry for your loss.

The most beautiful sight I've ever seen is my mommy's love for her family.....the safest place in the world is in my daddy's arms...

Re: My mom has been newly diagnosed with CC :' (

Dear Mommysgirl
I am so sorry...I completely understand what you and your family must be going through.  My mom who is now 72 was diagnosed after two biopsies on November 2011.  She has gone through 28 radiation treatments and is in the 6th month of chemotherapy.  She has been only receiving Gemzar.  Chemo was really tough for her because she's needed so many blood transfusions.  She developed a large blood clot in the portal vein which is now causing problems. She is on coumadin to try to reduce the clot size and prevent it from growing.  It's not an easy road. But, what we have learned that is helping us is that we take it a day at a time. We try not to think about what will happen in the future. One day at a time. She has good days and bad days.  We're hoping after her chemo treatments are done, that first of all it will shrink the tumor, but that she will recover from the long months of treatments, feel better and have some normalcy back.  She is depressed and anxious, especially at night. She has been through a lot.  Some people tolerate treatments better than others.               
I do have to say one thing and that is that for my mom, quality of life has become very important.  There has been numerous times when she was sick and after er visits after another, she told me that if this was how she would have to live the rest of her life, going in and out of the hospital and being sick, she told me she would rather stop all treatments.
I can go on and on about all of the issues and complications my mom has had...but it's too long to list.  But she manages to recover. But is it taking a toll on her.  I just wish there were more that I can do for her.

Anna

Re: My mom has been newly diagnosed with CC :' (

Hi,  My husband opted for palliative chemo and tolerated Gem/Cis well. He was 59 then turned 60 while he was on it. Doug went to a naturopath as well and took naturopathic support while on chemo. We believe this helped him tolerate the chemo well. We kept Doug's weight on with whey protein shakes that I would make with whey powder, fresh fruit, frozen fruit (too make it cold), juice and milk. He loved them.
Doug was so nervous his first day of chemo, but he had a wonderful nurse whom he developed a great relation with and he looked forward to his visits with Cheryl. She truly was a blessing who helped him with his journey.
Best wished to you and your mom.
Nancy

Loving my husband from afar.