Topic: Newbie from Chicago- Devoted to my Mama

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.

Re: Newbie from Chicago- Devoted to my Mama

Dear Kristina, welcome to our extraordinary family but sorry you had to join us. It sounds as though you are doing all the right things. I like to use the expression "we try very hard to stay optimistically realistic". Your attitude and Mom's sound good and it is very hard as one has to be very strong. Have you told her ONC that she is throwing up? There are many RX that she can take for that. I would suggest no large meals but rather have her 'graze' all day long on small stuff. I know you will be getting many more answers here, so hang in, you are not alone and 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: Newbie from Chicago- Devoted to my Mama

Hi Kristina,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum as well. But I'm glad that you have joined us here as you have come to the best place for support and help, and I know that you will get a ton of both from all of us here.

I know how hard this is for you. I was my dads carer when he went through his fight with CC and I felt like I had been hit in the head when we got the news of his inoperable CC. Like you I hate all of this too.

How long has your mum been vomiting everything up? And does your mums onc or doctor know about this? If not then I would advise that you get in touch with them to see about this. There are many meds that can help with nausea and this is something that should be looked into.

Please keep coming back here and let us know how things go for your mum. And if you have questions then ask away and we'll do what we can to help in answering them for you. We are here for you and know what you are going through. We care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Newbie from Chicago- Devoted to my Mama

Kristina....I would like to follow Lainy, Gavin, and Liz and welcome you to our site.  It seems that you have done much of your homework already - you are a wonderful advocate for your Mom.
The FOLFIRINOX regimen consists of: leucovorin calcium, fluorouracil, irinotecan hydrochloride, and oxaliplatin.  From what we have seen on this site, irinotecan can be rather difficult to tolerate.  I am wondering: had the vomiting started prior to her start of the clinical trial? Is your Mom able to hold down fluids?  You would want to make sure that your Mom is hydrated so please, do not hesitate to call the physician when needed.
We have a great group of people in the Chicago area including our Liz who welcomed you on our site.  You may want to try to connect personally.  I can tell you out of experience that coming face to face with another CC patient or caregiver is a wonderful feeling.
Please keep us posted.  We care.
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