Re: new cancer patient

Holly,
We have two sons, Jake is 21 and Noah is 15. We have been very open with them because at first I did not give them much info. about my cancer and they were hearing things from other parents and social media...besides researching it on the Internet. so we decided we wanted to be the first to tell them what was going on.  My best support comes from this site and other ladies I meet with for lunch that have CC. I was told I am not eligible for a transplant because I had metastisis in the liver. It doesn't make sense that if the cancer is only in the liver why can't they take the liver out and replace it. I have read a lot about the immune suppressant drugs you take for transplants and that can spread cancer elsewhere in your body if you have cancerous cells in your body. I just pray my doctors make the best choices and I really trust them.
Lisa

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: new cancer patient

Small update: I have been making the rounds of getting those second and third (and fourth..) opinions and learning as much as I possibly can. I am moving my health team up to Columbia Presbyterian in NYC. Have had two rounds of gem/cis, one to go, then scans, then hopefully moving over to y-90 beads in hopes of being able to take out half the liver. That's the hope, always the hope. I have one 6 cm, two 2 cm and a dozen little tumors throughout the liver (though no nodes) so I am definitely "behind the 8-ball" as they say. I also do not have a usual intrahepetic cc but a "collision" tumor with mixed properties of both cc and hepatocelluar. I think they call it cHCC-CC. Pretty rare, I gather, and probably originated in a liver stem cell. That's why it does not act like cc - - the blood work indicates HCC and the pathology says CC. So it is anybody's guess how things will behave. I know the prognosis is actually worse, but that may be because most are caught so late...not sure. My question is, is there anybody else out there on these forums with this? If so, what has been your experience with treatments? I am hoping to find others like me, Thanks!!

Re: new cancer patient

Wow, Holly, when you do something you do it in big style. I don't recall anyone with your specific situation, but if there is you can bet they will show up soon. Sounds like a good choice on your change of Hospitals. HOPE is the key word here and you never know what is just around the corner. Best of luck and as usual, please keep us posted. Wishing you 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: new cancer patient

Holly, thinking of you. Having children to raise really puts the fire in us to seek a cure! I have only learned if a "living donor" recently from a biography called "The Next 15 minutes by Kim Kircher. Kim's husband is a survivor of CC and its precursor (for some) Primary Sclerosing Cholsngitis. He also has kids and is "young". The book is from Kim's perspective and teaches coping with crisis by dealing with them in short intervals of time. Anyway, I don't have medical advice but do know my sister is in the same (almost) position you are in... They won't do surgery. She has a son not quite 9 years old who knows his Mommy is sick, but not the seriousness of it. She seems "fine" except a bit tired from chemo and low blood counts. I will continue to keep you  and you family in my thoughts, Holly!

Willow

Re: new cancer patient

Holly....I pulled up a few postings on combined hepatocellular-cholangiocarcinoma, but like you I hope for someone else to come forward and share present, personal experiences.   You are doing a fantastic job in obtaining knowledge from numerous specialists.  Hang in there and more power to you.   
http://jjco.oxfordjournals.org/content/33/6/283.full

http://www.asco.org/ASCOv2/Meetings/Abs … ctID=10042


http://www.cholangiocarcinoma.org/punbb … hp?id=6721
http://www.cholangiocarcinoma.org/punbb … hp?id=8025
http://www.cholangiocarcinoma.org/punbb … hp?id=5272

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: new cancer patient

Hi Holly,
I have icc so I am not any help with your type. You are doing a great job getting other opinions! Having children makes this journey so difficult, they are such a gift but I hate to see them worry. Call me if you want to talk. 330-903-6868.
Hugs, Lisa

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: new cancer patient

@ willow ... 9 is just heartbreakingly young. I'm so sorry for your sister, but happy she has you out here learning and posting and helping her. You must be a wonderful aunt. My main goal in wanting time to is prepare my daughter. It's complicated because I am divorced and she has lived fulltime with me and her step-father (the love of my life and a wonderful man) for seven years. She sees her Dad for dinner but does not want to live with him. But legally, when I go, that's it, he will have custody and will never let her live at our house. So ... Most children lose a Mom and still have Dad and the dog and their bedroom and house .... but it all evaporates for my daughter. Sorry to go on so. It's my private nightmare, her future, so I am glad she is a very strong girl and I am trying to live as long as possible!! It's my dream to see her graduate from high school.

@Marion ... thank you so much for the links, very helpful. I have been doing my homework. I think the worse statistical prognosis for cHCC-CC is due to the later stage at which it is discovered. Often, like me, liver function is perfect, there's no hep C or chirrosis, and no pain at all. I think I have A-L type C. Hoping to find others to commiserate with!

@Lisa - - I AM going to call you! Thanks!!

Re: new cancer patient

Oh, and Lainy, thanks for all the messages of HOPE! If anyone wants to hear about my rounds I can tell you all about NYC - - about Dr. Kato, Dr, Fong, Dr. Jarrnigan, and Dr. Facciutto. They are all awesome surgeons and amazing people, along with their "apprentice" surgeons and teams. You were all so right about getting those second opinions because having a team you have FAITH in, that they are trying to help you, is the number one step in all this. Ultimately I wanted doctors who think like I do, which might sound really strange, but it is such a subjective, gut-instinct kind of call.

Re: new cancer patient

Hi Holly,

My dad is meeting with Dr. Kato in January.  He had an unsuccessful resection and 2 other surgeons said they would not operate after this attempt.  Dr. Kato called us yesterday and is confident he can help my dad.  I would LOVE to hear about your experience with this team thus far.  Sending prayers and strength your way!

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: new cancer patient

Nikki, that is the most wonderful news! Nothing like going right to the top! This is very exciting and I know you will keep us posted! Save the best Christmas gift to open in January!

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 cancer patient

@Nikki. That is great news! Dr. Kato strikes me as someone who is trying to always push the boundaries of surgery. He may be an academic but he does not seem worried about his numbers or his reputation. He definitely thinks outisde the box. He will try things others won't and sometimes it works. He seems incredibly smart, thoughtful, brave. I picked him to work with for a variety of reasons - - mostly because his instincts about chemo and radiation resonate with me and my case and all I have read. His interventional radiologist Dr. Sperling is just as smart, aggressive, confidant as Dr. Kato. I have not met the oncologist yet, but I bet it's the same story.
let's keep in touch! high-five!

Re: new cancer patient

Holly, I forgot to mention that my sisters Dr recently told her that it appears she , like you, has a mixed / hybrid of HCC and intrahepatic CC since it seems to have characteristics of both . I think they said vascular invasion is more common in HCC than CC and also, microscopically it may have had charachyeristics of both types of primary liver cancers. so so bizzare. raises so many auestions! Oddly, the Gem-Cis shrunk the main tumor inside the liver while the one in her portal vein grew. She has seversl reslly small onex in the lived as well. Radioembolization with Y-90 is next, as soon as insurance approves it. They will only do 1/2 of the liver af a time, for safety. Even with this, they made it clear that this is not curative. Still, could really prolong her life! Like you, she's otherwise healthy with NO predisposing risk factors.
I definitely feel for your family situation and the dramatic change it could mean for your daughter. Time is what you need to figure things out and help your daughter mature and cope. Many live well and long, treating this as a chronic illness. Praying for your successful trestments snd ultimately a surgery. Don't give up hope!
Willow

Willow

Re: new cancer patient

Holly, I forgot to mention that my sisters Dr recently told her that it appears she , like you, has a mixed / hybrid of HCC and intrahepatic CC since it seems to have characteristics of both . I think they said vascular invasion is more common in HCC than CC and also, microscopically it may have had charachyeristics of both types of primary liver cancers. so so bizzare. raises so many auestions! Oddly, the Gem-Cis shrunk the main tumor inside the liver while the one in her portal vein grew. She has seversl reslly small onex in the lived as well. Radioembolization with Y-90 is next, as soon as insurance approves it. They will only do 1/2 of the liver af a time, for safety. Even with this, they made it clear that this is not curative. Still, could really prolong her life! Like you, she's otherwise healthy with NO predisposing risk factors.
I definitely feel for your family situation and the dramatic change it could mean for your daughter. Time is what you need to figure things out and help your daughter mature and cope. Many live well and long, treating this as a chronic illness. Praying for your successful trestments snd ultimately a surgery. Don't give up hope!
Willow

Willow

Re: new cancer patient

Hi Holly,

Thank you for your opinion!  I'm so glad to have found someone that has met with Dr. Kato.  I have read countless articles on his success with some of the most difficult surgeries in the world. Right now, we need someone who is going to be brave and think outside the box!  We are so excited to meet with him.  I know he does not take on all cases and will turn patients away if he believes he cannot help them, so the fact that he is willing to take my dad on means only good things.  I am excited that you are in some of the best hands in the world!  Let's definately keep in touch.

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: new cancer patient

@Willow, it sounds like your sister and I have a lot in common. You guys can call me if you want to talk or she wants to talk. I get it that talking is also a lot of times NOT what someone wants to do! (202-907-3568) Tell her to hang in there. I'm hoping for y-90 next, too. Hoping for a down-staging, dreaming of surgery. I have tiny tumors all through the liver except one wedge part has fewer and that's where they would resect to. I have no nodes, no other issues, completely healthy otherwise. Chemo just does not seem to work well on these cancers, I'm not a fan of it. So I call this the whack-a-mole approach to cancer. Hopefully we will all get YEARS not just months with our children....tell your sis I am praying for her, too. She is definitely in our thoughts (I told my family about you guys)

@Nikki, I'm so happy for your father to have this chance at another go! I have great faith in that doctor. Definitely keep in touch (phone number above) as we walk the same path. Tell yr Dad I think he is in good hands there.

Re: new cancer patient

Kim Kirchner visits our site.  She is a lovely lady and a wonderful writer.  Here is a link:
http://www.cholangiocarcinoma.org/punbb … hp?id=8877
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: new cancer patient

AH, thanks for the link, Marion. What a great story from Kim! I will read her book! How inspiring! I hope the day will come that there will be many more transplants for cc. Right now so many of us are too far along, but there is always that glimmer of hope. xo

Re: new cancer patient

Holly, thanks for the offer to talk via phon. Will keep that in mind! Meanwhile, my whole family had bad stomach flu this week, including me. Feeling better and must catch up now on the stuff that fell by the wayside!
Enjoy the book!

Willow