Topic: Our journey has just began

Hello. My dad was diagnosed August 1st. It has spread to his liver. The first doctor said surgery is not an option. We will be at MD anderson next week for a second opinion. I've done a little research and this site is so very helpful. I'm not sure what questions to ask the doctor but hopefully I've researched enough to ask something. I welcome any suggestions about md anderson and just suggestions in general. I live in Florida so Moffitt is another option since I am here. Bless you all that are facing this horrible beast. Thank you in advance for your support throughout our journey and beyond.

Re: Our journey has just began

Sorry for the double post. Doing this from my phone and it didn't appear to post and I don't know how to delete. Lol newbie problems

Re: Our journey has just began

Welcome to the best place to be for CC support. You have already made a wise choice with MDA and Moffitt. If surgery is ruled out I would think the treatment plan would depend on your Dad's age. My husband was 73 and very healthy otherwise. He had a Whipple and 3 years later Cyber Knife, all bought him 5 1/2 years. The best thing you can do is to read as much as you can.  as knowledge is our best tool to fight with. We also have a Search site at the top, just type in a word or two and posts will pop up on that subject. You might try "questions to ask". May I ask where his CC is located and his age and does he have any signs or pain? We would need to know a little more what to tell you to ask. You are not alone in this we are one big amazing family. Please keep us updated now 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: Our journey has just began

Just wanted to let you know that Cyber Knife is to remove tumor. If the tumor is over 6cm they use radiation to shrink it first. Also must be in an area that CK can reach. Best of luck. It is non invasive and only takes 1 - 4 days of treatment.

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: Our journey has just began

Hi there,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear about your dad as well. But glad that you've joined us as you are in the best place for support and help and you'll get loads of each from all of us. I was my dads carer when he was diagnosed with CC back in 2008 and so know what you are going through right now.

That's great that you are seeking a second opinion from MD Anderson and your dad will be in good hands there. Please let us know what they say about everything but you could also consider further opinions as well. Make a list of the questions that you want to ask in advance and make sure that you write down the answers that you get as well. It's easy to forget what is discussed at these meetings.

And I hope that you will keep coming back here as well. You are not alone in this, we are here with you and 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: Our journey has just began

Welcome to a great site. I have read many links and posts from members and they have given me not only invaluable knowledge, but hope. Glad you are getting a second opinion. My husband's cancer also spread to his liver and they were able to remove it and follow up with chemo. Hang in there. You are not alone. Best wishes for your dad.

Re: Our journey has just began

Welcome to our site. But sorry you had to join us. Yes, cc is scary. But there's hope for us.
I was diagnosed in March 2011 with unresectable stage IV cc and, although I wish I could have had surgery, I am still here and finally back to working part time!
There are many alternatives nowadays if surgery isn't an option, and MD Anderson is one of the best places to be.
Good luck and please let us know how things go.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Our journey has just began

Welcome.  I would like to add to what  Lainy, Gavin, and Melinda already have conveyed to you that you may want to consider perusing the following:

http://cholangiocarcinoma.org/the-disea … diagnosed/

Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/


Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/

Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

MD Anderson has a robust Biliary Department; don't be afraid to ask for patient friendly interpretations of the medical information.  And, if you can either tape record (some institutions won't allow hence, ask beforehand) or rely on taking notes. 
Good luck and please keep us posted,
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: Our journey has just began

Thank each of you for your responses. I apologize for not getting back here sooner. It was a busy week in Houston and then I had to fly back and throw my 3 year old a birthday party! It was good times all around.

My dad's time at MD Anderson went good. I'll be honest, I was a little taken back when we first got there. There are A LOT of sick individuals fighting their battles there. After the shock, we relaxed a little and focused on the appointment and my dad.

Dr. Javle and his team were absolutely amazing and wonderful and so very caring. Dr. Javle would have sat in the room all day and answered our questions. (at least that is how he made us feel). He confirmed the my dad does indeed have CC. It is stage 4 (I think stage 4a). He was positive for CK 7 and weakly positive for CK 20. Negative for PSA, TTF-1 and CDX -2. I am still learning what all of that means too.

My dad is only 66 and otherwise pretty healthy. He did not present with any pain. He lost some weight quickly and was tired. Went for a physical and discovered that his calcium levels  were elevated. That is how this all started. What a silent enemy!!!

He starts chemo tomorrow, Gemcitabine and Cisplatin and will repeat every 14 days. We will then go back  to MD Anderson for re-staging in 3 months.

Thank you all again for your responses and support. What an awesome way to learn and connect.

Alison

Re: Our journey has just began

Dear Alison, you are so right in calling CC the silent enemy but you were also so right in seeing Dr. Javle. Everyone loves him and he is one of our main to go to  ONCs. Good news that a game plan is in place now and like I said when there is a plan the fright turns to fight. Happy Birthday to your little man and please do keep us posted on your Dad's progress 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: Our journey has just began

Alison....glad that everything went well and for your Dad to start treatment real soon.  Not sure whether anyone had mentioned a "port" for chemo infusion.  Most likely you already have read up on older postings re: Gem/Cis and side effects but hoping for others to share some current information with you as well.
A belated Happy Birthday to your little guy too.
Good luck to your Dad and please keep us posted. 
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: Our journey has just began

Hi Alison,

Thanks for the update and no apologies are ever needed from you. Glad to hear that things went well at MD and glad also to hear how you got on with Dr Javle. I will keep my fingers crossed for your dads chemo and hope that it goes well and does it's job. Please let us know how everything goes as well.

My best 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.