Topic: New Member

My name is Amy & my 62 year old dad has just been diagnosed with cholangiocarcinoma.  The tumor on/in the liver is 17 cm in size and part of it is wrapped around the portal vein.  We visited the oncologist this past Friday and were told that while this cancer is not curable it is treatable.  He had a PET scan on Monday and we will find out the results of that tomorrow.  The PET scan was done to make sure the cancer isn't anywhere else.  He will have a life port put in on Thursday then on Friday he will have a colonoscopy and an endoscopy.  The first chemo treatment is scheduled for Tuesday.  The oncologist told us that due to the size of the tumor and the fact that it is wrapped around the portal vein, it is considered Stage IV.  Right now, my dad is not having any pain, but tires very easily and is a little jaundiced.  This is a very scary time for our whole family but my dad is in great spirits and is ready to fight this all the way.

Re: New Member

Dear Amy, welcome to our remarkable family but sorry you had to find us. We know so well what it feels like to get that Diagnosis of something you never heard of in your life. The first things to know are that it helps to read up on CC as knowledge is one of the best tools we have to fight this. It will help you to know what questions to ask and don't be shy about asking. The next thing is to make sure that the Hospital and ONC Dad are using have experience with CC. Also keep in mind that it is normal to get 2nd and 3rd opinions. As for the Jaundice did they talk about stents? Know that you have come to a good place here and you will find the most courageous, loving and smart people the world over. Good attitudes certainly help and it is very important to try to be very strong. We are here for you so use us, please, to ask, advise or vent away. Please keep us posted on 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: New Member

Hi Amy,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. I know exactly how you feel right now as I felt the same when my dad was diagnosed. His tumour too was wrapped around the portal vein. I know that this is such a scary time right now for you all. Not just having to deal with the diagnosis but hearing so much about things that you most probably have not had to hear before.

But please do not give up hope and I am happy to hear you say that your dad is in great spirits and is ready to fight this all the way. A great positive attitude will carry you a long way here. And I know that you will feel better once a treatment plan is in place and then the fight back can begin.

I'm glad that you've joined us all here as you have come to the best place for support and help. And I know that you will get tons of both. I came here after my dad was diagnosed in 2008 and everyone helped me so much, and I know everyone will do the same for you. Please know that we are all here for you and know what you are going through right now. Keep coming back here and keep us updated on how things go for your dad.

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: New Member

Amy...I would like to follow Lainy and Gavin and welcome you to our site.  I am happy that you have found us.

As mentioned numerous times before  on this site, obtaining a second or even third, professional, opinion is highly desirable.  Personally, I believe it to be a "must" with this disease. 

I am wondering:
has the diagnoses been made via readings of a PET/CT scan or PET and CT scan?
Has your Dad consulted with a surgeon?

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

5 (edited by Pamela Wed, 10 Oct 2012 16:04:54)

Re: New Member

Hi Amy! I would like to welcome you to this site and tell you that your your Dad's cancer sounds a lot like my daughter Lauren's. Her large tumor started out 17x13x19cm. It has shrunk to 9.8x9.3cm. after a year of chemo. Some people will say that chemo doesn't work, but I know it did for my daughter. She started out with five smaller tumors all 2cm. or less on the other side as well. There are only two that show up now, one which appeared after Lauren had a radioembolization procedure in May and it has shrunk since it was first found. Her large tumor is also wrapped around the portal vein. She was diagnosed in August of 2011 and feels better now than she did back then. I just wanted to tell you all of this to give you some hope. We pray one day Lauren will be able to have a resection and I will pray that your Dad will respond well to chemo and maybe someday have a resection as well. You have to pray for miracles and never give up hope. All the best to you, your Dad, and the rest of your family.

-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: New Member

We visited the surgeon today to get the results of Dad's PET Scan....some good news and some bad news.  The good news is that its seems the pancreas is not involved...it did not light up on the scan.  The bad news is we still don't really know where the cancer is coming from.  The PET Scan also showed that a couple of the lymph nodes may be affected.  There was also an area of concern found on one of his vertebrae (L4).....a bone scan may be ordered in the near future.  Tomorrow morning Dad will have is life port put in.  Friday morning he will have an endoscopy and a colonoscopy, although the surgeon and the oncologist both seem to think there will be nothing found with either of those.  The oncologist doing the chemo will start with gemcitabine and cisplatin (on Tuesday).  We have been told that because the tumor is so large and because it is wrapped around the portal vein, that even if chemo does shrink the tumor, removal of the tumor and/or a liver transplant is not an option.  I think we are going to be sending records to UVA and/or MD Anderson.....my dad's words today "we're going to lick this thing one way or another. Out damn cancer, OUT."  He is definately ready for a fight!!
Any information anyone can share about any of the cancer treatment centers would be greatly appreciated!

Re: New Member

Amy, I LOVE your DAD's attitude, it reminds me of my Teddy. He would say, "OK. now we know, so let's fix it!" I think it is a good idea on the 2nd opinion because even if they agree it will put your minds to rest on that question. I would probably do MDA but that is my opinion. Heck, do them both. The GEM/CIS seems to be the cocktail of choice around these parts. You are doing a great job with this and because Dad has such a good attitude you of course will want yours to stay up with his. So, Be Strong. Please let us know what happens as we do 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: New Member

My dad had his first chemo (GEM/CIS) treatment yesterday.  We visited with the doctor first to go over the results of the test he had sent off to a lab in CA and it was determined that the oncologist's original diagnosis of intrahepatic cholangiocarcinoma was correct.  The oncologist went over with us the fact that this type of cancer is not curable but it is treatable. 

I spoke with my dad last night to see how he was feeling after the chemo and he said he felt great.  I talked with him first thing this morning thinking he probably wasn't going to be feeling so great and to my surprise, he again replied that he was feeling great!  I talked to him a third time during lunch today and again, he is feeling great!  The doctor told us that some people have little if any side effects from the chemo and then others have every side effect known. 

For 2 weeks prior to his 1st chemo treatment my dad has been taking something called "hedgeapple" .....  it is a strange looking fruit that you freeze then you cut a couple of "pill" shaped pieces each day and take them.  There has been research done that shows this fruit has the same effects on cancer that chemo does.  I will have to do some more research on this fruit....sounds interesting.  Has anyone else heard of hedgeapple or know anything about it?

9 (edited by Pamela Wed, 17 Oct 2012 11:44:58)

Re: New Member

Hi Amy,

That is awesome that your dad is feeling great. From my daughter, Lauren's experience with Gem/Cis, she had very mild side effects compared to many. She would feel tired and achy for a few days and then be fine. She was also on 5FU with the Gem/Cis. The main concern her doctor had with her was low platelets fron the Cisplatin. She also lost her hair. I hope your dad continues to feel well. Chemo is cumulative, so each time he has it he might feel a little worse.

I have never heard of hedgeapple. What is it and where do you get it? You might want to ask your dad's oncologist about it. Lauren's doctor was very firm on what and what not she was allowed to have in the case of supplements or weird foods. I am just the mom of a daughter with cancer, so anything I have said is purely from our experiences. Good luck to your Dad.

-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: New Member

Hi Amy,

Thanks for letting us know how your dad is doing after his first Gem/Cis treatment and that is great to hear that he is doing so well! His spirit seems really good and he sounds so up for this fight! The doc is right in that people do react different to the chemo's, some have loads of side effects and some have none and lets hope that your dad continues to do so well after each treatment.

I've never heard of hedgeapple and can't recall it being discussed here either. But you can use the search forum function at the top of the page to see if that throws up any discussions on it.

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: New Member

Hi Amy,

Thanks for letting us know how your dad is doing after his first Gem/Cis treatment and that is great to hear that he is doing so well! His spirit seems really good and he sounds so up for this fight! The doc is right in that people do react different to the chemo's, some have loads of side effects and some have none and lets hope that your dad continues to do so well after each treatment.

I've never heard of hedgeapple and can't recall it being discussed here either. But you can use the search forum function at the top of the page to see if that throws up any discussions on it.

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: New Member

Amy, glad to hear Dad is taking the chemo so well. With this crazy CC and the chemo and perhaps Meds number one rule is to not taske anything new or different without asking the ONC first. One never knows what they might be disturbing. I Googled it and honestly, make sure they ask the ONC!

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.

13 (edited by jathy1125 Wed, 17 Oct 2012 13:50:33)

Re: New Member

Amy-Glad your dad's not having any major side effects. Pam, was right about chemo being accumalitive so the farther into the his treatment he might expierence some. I personally always felt good on chemo day but about 2 days later I expierenced major ache, tiredness.. I usually just rested for about 24 hours and was better.
I think everyone would be suprised if you googled hedgeapples, you will probably recognize them. I thought the only purpose they served was to trip over and keep bugs out of your basement!! (we put several in the basement every winter!!)
Lots of prayers-Cathy
PS-Here is an interesting site about hedgeapples,  it is very interesting or very scary LOL!! www.mullinslogcabin.net/hedgeapple

Re: New Member

Hi Cathy, that is the one I saw. Yikes! I went further but was still not convinced. Again, I think it best to always ask the ONC.

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.