new cancer patient (Page 1 of 2)

Hi,
If I were you, I will get a second opinion from an interventional radiologist from John Hopkins to see whether chemoembolization or radioembo will be an option if no mets to other parts of the body . If your HCC-CCA  ( mixed type)  tumors only confined in the liver,side effects of  chemoembo or radioembolization will be much easier to tolerate . Otherwise systemic chemotherapy recommended by your oncologist will be the logical choice.
I may disappoint you in that being a CCA patient for 40 months and continuing doing research on this cancer, there is no such thing at this moment can be referred to as " Magic bullet" for our kind of cancer.
; there is also no such thing as " the best chemo regimen" for CCA.
I donot qualify to answer The last two questions since I am not a doctor, that will be one of the questions you should ask your doctor.
For a list of regimens, please go to the experience forum on this web site, and you will find under " systemic chemotherapy in general for cholangiocarcinoma "
God bless.

Holly...welcome to our site. I am wondering:  has liver transplantation been ruled out?

Hugs,
Marion

Hi Holly,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through right now. But I am glad that you've joined us all here as you will get so much support and help from everyone. Keep coming back here as we are all here for you and know what you are feeling right now.

Not much I can add to what the others have said to you already, but how do you feel about seeking a further opinion? I know your surgeon at Johns has ruled out surgery due to the other smaller tumours, but did he/she talk about the possibility of surgery at a later date if chemo now could deal with the smaller tumours? Just thinking out loud here and hopefully others may have some input on this.

There is nothing wrong with being scared, that is natural. But you are not alone here, we are all here for you and will help as best we can, and we care.

My best wishes to you,

Gavin

Holly,
Welcome to this amazing second family. I was diagnosed over two years ago. I have had many types of chemo, radiation and surgery. There isnt one answer for everyone, this is a tricky disease. I will pray that your specialists will come up with the best treatment plan for you. If you want to talk just let me know, I would be happy to answer any questions about my treatment.
Lisa

Thank you all so much for your posts! In my little world full of heartbreak and bad news you are an encouraging and loving bunch! My surgeon at Hopkins is Dr. Choti. My bad news is that there is a tumor 6.7 cm and maybe three little ones, so he will not operate. They still cannot figure out exactly what cancer I have though all bets seem to be on the cc. They want another 10 days to do more pathology work and bloodwork. There is no cancer anywhere else in my body and I am in extremely good health. But the Oncologist, Dr. Azad, says there is little they can offer me besides systemic chemo. I keep reading online about all these other techniques but they do not seem to want to go there. Sorry to go on about it, I'm just frustrated. I have three children and the youngest is 14 and I am basically a single mom and I am so heartbroken. Does anyone have advice on how to stop crying?

Dear Holly,

I remember asking the same question about crying when my Lauren was first diagnosed. I think in a way the person with cancer and their caregivers go through something like the stages of grief.  I remember crying when I went to bed, crying when I first woke up, crying when I heard a sad song, cried when I saw a young mother with small children...just about anything made me cry because my daughter was only 25 at the time and had this terrible cancer. I did get a little better in time, but Lauren had a setback and it happened all over. That time I decided I needed help. I talked with my family doctor and was put on medication. Lauren has found it beneficial to speak with a social worker. Just know there are options that can help. You are fairly new with your diagnosis, right? It is such a major shock to your system. My heart goes out to you. We are all here to help.

Love, -Pam

Think of MD Anderson Hospital in Texas for a 2nd opinion..or St. Louis.  Those are the ones (and Dr. Kato) that I've read about with fantastic results.  Since I know Dr. Choti as my own surgeon, he tends to be a bit conservative.  He feels that one needs to seek the best quality of life, at least that's what I've gained from him. and not spend the last days living miserably with chemo's side effects.   Surgery is the only option for a cure.  He has told us many times, that chemo is not a cure, but can hold the cancer at bay for awhile.  I hope you get a second opinion.  I've read of very successful treatments here on this website that otherwise might be considered not possible somewhere else. 
(I still cry and it's been over 2 years...I've had a terrible rash since I had a hernia repair last week and they felt it was getting systemic and they feared that it could get into the mesh of the hernia repair.  The itching became unbearable and I finally went to the ER where I got prednisone intravenously.  Today the dermatologist I went to told me it was on the surface, not inside.  I surprised even myself by crying ((and that was at good news).  The strain and fear and the great unknown take a toll, but there is a bright side and life is good even under these circumstances.  Keep coming to this discussion board as the best, most loving people are here and you will get tremendous support.  Good luck and keep us posted if you get second opinion.

Holly,

Welcome to the site and sorry you had to join us.  Many people on this site get second opinions. I got three opinions on my treatment.
Best of luck with chemo and keep us posted!

-Susie

No downer, Pam! Thank you so much for writing! Info is only a good thing - it helps you make better decisions. I will let you all know when there are more opinions. I am in the middle of changing health insurances so I can go elsewhere for those after 11/4/12. BTW I hope Lauren's tumor shrinks so she can get to the next level of treatment she wants to pursue. You and she are an inspiration to me already.

Holly-Welcome and sorry you had to find us! I am a CC survivor 3 years cancer free!!! I am alive due to 2 transplants (yes 2, not a typo!!), please read my story at www.catherinedunnagan.com, it is full of HOPE!!
My miracle worker was Dr. William Chapman (google him it is very impressive) at Barnes-Jewish in St. Louis MO. Dr. Chapman is one of the most amazing doctors, so full of heart and tops in CC treatment. One of the main criteria for a transplant is that there is no lympnode involvement and it hasn't spread. Transplant is still not on all doctors list of treatments but it is one the cure for CC, so please make sure it is ruled out by a doctor who believes it is an option, many  doctors don't. Please call (618-567-3247) or email jrdunnagan@gmail.com if I can help. Holly, on July 31, 2008 I was told I had 6-8 months to live and I was only 52 years old, thanks to God, 2 strangers and Dr. William Chapman I will be celebrating my 58th birthday in a couple of weeks, 5 more birthdays since that day!!
Lots of prayers and HOPE-Cathy

Hello to all you wonderful loving souls! What a journey we are all on and what a joy it is to have found this site for companionship and comfort and solace and info. I am taking all your suggestions - - I have lined up two appts in NYC next week for more opinions. I already heard from two other places over the phone based on my scans that I am not a candidate for resection (I knew that) but one offered an interarterial pump protocol which sounds interesting. I already started my systemic gem/cis at  Hopkins at what the nurse said was a surprisingly high dose - - almost killed me but I'm going back for the gemcitibine alone tomorrow so I must still be here. But the side effects are just unbelieveable, unending. I will keep you posted. Thank you for all your help and support.

Does anyone have any experience with living donor transplants and what the recurrence rates are?  I have been told that once you have multiple tumors or a big one, you can never qualify for a transplant. I have multiple intrahepatic tumors, one over 5 cm but no nodes, nothing anywhere else. Has anyone here ever gone that route? Go ahead and tell me I am dreaming, I already know it. The world sometimes looks black except for one skinny doorway about two miles away that is open just a crack showing a little warm light. Just a crack, and you can barely see it.

My daughter is just 14. How much do you tell them about your disease? Do you all have local support groups? Are they helpful?