Topic: Introduction for caregiver

Hello,
My dad is diagnosed with cholangiocarcinoma with metastisis to lungs and liver.  He was not able to have surgery.  He has been through one course of gemzar/cisplatin and, while the current tumors stayed almost the same size, new ones appeared in his lungs and pelvis.  We are on our way to a new physician who participates in phase I clinical trials located in San Antonio.  This site has helped me keep my emotions afloat with some hope that we can maximize our family time together.  Thank you to all who support this blog.
SBM

Re: Introduction for caregiver

Hello Shannon and welcome to the best little club in the World that no one really wants to join. I am so sorry to hear about your Dad but you are certainly doing the right thing in getting another opinion. May I ask what hospital you will be going to in San Antonio and where has Dad been treated so far. When was he diagnosed? Please keep your hope up as a good attitude will get you far and we all gotta have HOPE. Try to be very strong as well. Looking forward to reading what the new ONC says! Best of luck and please do keep us posted.

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: Introduction for caregiver

Hi Shannon,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But I am glad that you've joined us all as you've come to the right place for support and help, and I know you will get tons of both from everyone here.

I am glad that you are seeking further opinions for your dad and I hope that he gets some good news from this trial. My fingers are crossed for him and please can you let us know more about the trial and how it goes for your dad. You and your dad sound like you have your fighting heads on and that is good to hear. A positive attitude will help and remember that we are all here for you as well. We know how you feel and what you are going through right now. Keep coming back here and know that we care.

My best wishes to you and your dad,

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: Introduction for caregiver

Shannon...a warm welcome from me also. I am glad you have joined in.  So sorry about your Dad's partical response to the Gem/Cis, but wish you tons of luck with the next appointment.  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

Re: Introduction for caregiver

Hi Shannon,

I am glad you found us, but sorry you had to. I'm sorry your Dad didn't have a good outcome with Gem/Cis. Hopefully, the new doctor will have something that will work. We are all here for you, so please come back and let us know how your Dad is doing. Best wishes,

-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: Introduction for caregiver

Thank you for the warm responses.
Our second oncologist is Dr. Tolcher at START (South Texas Accelerated Research Therapies) in San Antonio.  He is the top physician there.  This facility has an integrated spa, nutritional counseling and genetics lab (OncoPath)  They conduct phase I clinical trials.
We have been enrolled in a study for the cardiac effects of tivantinib. He will be given a three-week course with numerous EKG tests.  Following that, my dad will get a combination of tivantinib with gemzar for two months.  We are currently in a holding pattern to align his other medications with the study, change some and allow the Gem/Cis to exit.  They also found a bile duct obstruction and will have a stent inserted this week.
Tivantinib is ora, while Gemzar is a once-weekly infusion.
We can only go forward and your blog is very helpful and hopeful.
Cheers,
SBM