Topic: Newly Diagnosed

Hello Everyone,

I just learned last week my 81 year old dad, who happens to be in great shape and health, has cholangiocarcinoma. It has been a three week journey so far. The initial problem that brought him to the hospital was severe pain. They thought it was food poisoning, then something gall bladder related. They did an ERCP and put in a temporary stint. He then went onto the U of Minnesota and had a endoscopic ultrasound and another ERCP to put in a more permanent stint. The EUS showed cancer including in two lymph nodes. There is also a vein involved(can't remember name.) We met with oncologist connected to U of MN and said would do chemo once a week for 3 weeks and be off the 4 week. Would do 3-4 cycles and was going to use Gemcitabine, trade name Gemzer. She said he had about a year to live and surgery was not an option. Left that appointment quite numb.

We went onto the Mayo in Rochester, MN a few days later. Met surgeon who is expert at Mayo for this type of issue. She said surgery not an option right now, but wants to start chemo treatments. One week on, one week off. She then offered some other options. I left with some hope unlike earlier experience. Do not know what type of chemo yet as we go back to Mayo on Thursday this week to meet with oncologist.

As you can see from my lengthy post, I am very scared and sad. Anything you can share to provide insights, encouragement, hope would bless me beyond words.

Re: Newly Diagnosed

Dear Nancy D, welcome to our remarkable family but sorry you had to join us. You have done the best you could possibly do at this point. Mayo is one of the top places to be for CC treatment. Do NOT listen to people who don't know, themselves and offer bad advise when it comes to CC. We DO believe in 2nd and 3rd opinions and we DON'T believe in time frames. We were not born with expiration dates stamped on our feet. You need to steel your mind as CC seems to be only for the strong. Attitude is not everything it is the ONLY thing. You have come to the right place to get suggestions, give advise or just rant if that makes you feel better. Looking forward to your report on Thursday and wishing you all the best!

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: Newly Diagnosed

Nancy.... know that you are not alone in this - we are with you all the way.  As Lainy has mentioned, Physicians can only give a time frame but this is your Dad's cancer; his body, and his response to treatment.  Looking at it from this perspective may help you relax a bit.
Please continue to reach out to the great members of this site – we understand and we care.  Sending tons of positive hugs your way and looking forward to hearing all about Thursday’s visit with the physician.
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: Newly Diagnosed

Hi,
Mayo is a good place to start for Tx of this cancer.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Newly Diagnosed

Hi Nancy, 

Welcome to the forum but I am sorry at your Dad's news and that you have had to come here.  You will get so much support and advice for your Dad and you.  Someone, often many,  alway stops by to help.

Clare

In the stars now . . . .

Re: Newly Diagnosed

My father (66) is going to Mayo in Rochester for his treatment.  His too is inoperable.  He is on Gem/Cis...He does Gem/Cis one week, the next week Gem, the next week off.

He is tolerating the chemo very well.  He hasn't gotten sick at all.

Re: Newly Diagnosed

Hi Nancy

I can honestly say this site has been a godsend to me, I too am on this cc journey with my mum being recently diagnosed. People on here have such wisdom knowledge and comforting words of advice and support. Again I would echoe what is being said- please seek a 2nd opinion if you feel that the drs aren't knowledgeable, I have done that for my mum and now my mum is being  referred to a specialist team for further testing. Please come on this site as often a you need to, I have been on this site when ive felt confused and down and within a few hours, you get a handful of posts which are so helpful.
please take care of yourself,

Re: Newly Diagnosed

Hi Nancy,

I would like to welcome you to this site, but I am so sorry to hear about your Dad. Being scared and sad is very normal after being given such hard news to comprehend. Once an action plan is in effect, you will feel better. Take things as they come and try to remain hopeful. Cherish the wonderful times you spend together. Your dear Dad is lucky to have such a caring daughter. I am wishing you and your Dad all the best.

Love,
-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: Newly Diagnosed

Hi Nancy,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. But I'm glad that you've joined us all here as you are in the best place for support and help and you will get loads of each from everyone here. Not much that I can add to what the others have already said to you but I wanted to welcome you here.

There is nothing wrong with being scared, that is very normal. I can still remember how I felt after my dads diagnosis and my head was spinning with everything that was going on. Your dad is in in very good hands at Mayo and he will receive excellent treatment there. But do not be afraid to ask questions as the more info you all have the better informed you all will be when it comes to decision making.

I hope that you get some good news today at your meeting at Mayo and please let us know what they say. You are not alone in this now, we are all here with you.

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: Newly Diagnosed

Dear Friends,

Thank you so much for taking the time to share....my heart is so blessed! What compassionate hearts you all have!

Our time at the Mayo today went well. There was a bit of good news as when my dad was working thru the UofMN oncologist, she said he was not eligible to take the second drug that is taken along with GEM due to some measurement found in his blood that is kidney related. The Mayo was suggesting the same thing until his blood test today came back with a good reading, so they are going to incorporate cistantin(sp?? know this is not even close, but figure you know what I am talking about) into his chemo. He has no history of any kidney issues, so they were surprised UofMN test had the reading it did. They will continue to monitor to ensure trend consistent with results from today. He gets his port put in on Monday and chemo starts 8am on Tuesday. We had port care training today after meeting with oncologist.

He continues to be mentally and physically strong, great appetite and full of energy. I hear him on the phone right now talking/laughing with his 90+ year old golfing buddy about iron shafts and drivers. It is music to my ears.

A day at a time!

Thank you for your wisdom, care and support....you are so special!

Re: Newly Diagnosed

Nancy, this is all good news. When a guy talks golf you just know everything is good! Best of luck Monday on the port, should just be a no brainer. Yea! For moving forward.

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: Newly Diagnosed

Hi Nancy,

This is good news indeed! Thanks for sharing that. Your dad is in good hands at Mayo and I am glad that they are treating him there. It is Cisplatin that they will be adding to his chemo regime and the Gem/Cis that he will be on is a very common chemo combination for this cancer. I hope that the good news continues for your dad alongside his strong appetite, laughs and golfing talk with his buddies!

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.