Topic: My Story

Hi Everyone,

On January 21, 2013 my life turned upside down... my father was diagnosied with cancer, but they didn't know if it was hepatocellular carcinoma or cholangiocarcinoma. All lab work is normal...Liver Enzymes, Red blood cells, white blood cells, tumor markers... everything is NORMAL! The only symptom he has is weight loss and we were thinking that it might be from his diabetes. He had gone to his doctor for his blood surger levels because it had gone up a little and he needed to increase his oral meds. His doctor felt his liver and it felt a little large so he sent him for an ultrasound and ultrasound sent him for a CT. CT showed that there was a tumor. His doctor referred us to an oncologist and the oncologist said that it is either HCC or CC and said that we needed a biopsy to confirm. After the biopsy we were told that it was CC, stage 4a. They came up with stage 4a because it has gone from the bile duct to the entire left lobe of the liver and to 2 parts of the right lobe. But what I cannot get my head around is that all his blood work is normal. How can something be stage 4 and have normal white blood cells and normal tumor markers? Yesterday was our first day of chemo. They are giving him Gemzar and Oxaliplatin and next week they are giving him only the Gemzar then he's going to have 2 weeks off and they're going to give it again. They said that they have to give him 3 2 week sessions and get another CT and hope that the tumor has shrunk. If it has shrunk they will give him 3 more session but if it doesn't they will give him another type of chemo.  I'm trying to be as possitive as I can but its just so hard sometimes. Has anyone heard of this combination of chemo?

Re: My Story

Dear Daughter welcome to our remarkable famiy but sorry you had to find us. I cannot help on the chemo but want to say you have come to the right place for support for this strange monster we call CC.  May I ask where Dad is being treated and who his ONC is? Please know that the more you can read up on CC the better the tools you have to fight with.  Also as you may had read, we are big believers in 2nd and 3rd opinions. Other thn that I hope you can take each day as it comes and attitude goes a long way for everyone. Please keep us updated 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: My Story

Welcome to the site and sorry you had reason to find us.  I am also sorry that your Dad and your family are going through this battle.  I can't give you too much information about your Dad's situation since my situation was so different.

I agree with Lainy about 2nd and 3rd opinions.  This is such a rare cancer and so few doctors outside of major cancer centers have dealt with it, it just makes sense to talk to more than one doctor. 

I am sure others will come along and give you more specific information. 

Take care.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My Story

Hi Daughter,

I would like to welcome you to this site, but I am sorry your Dad has CC. My daughter, Lauren has CC. She has been on both of the chemos your Dad is on. There are many combinations tried for this cancer. My daughter was never on Gemzar and Oxaliplatin together, but she has been on many others as well. Gemzar is easy for her to handle but usually gives her a low grade fever. Oxaliplatin was pretty rough. She had neuropathy in her hands, feet, and could not drink cold liquids for about a week after treatment. She had an allergic reaction to Oxaliplatin on her 6th treatment, which is not uncommon. My daughter has been on many different chemos for 16 months and is now able to have surgery, so please try to stay positive and never lose hope.

Hugs,
-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: My Story

Hi Daughter, I'm new to the site but was diagnosed with metastasized cancer with tumors in my liver and some bones of my torso in Dec 2011. I too had no blood markers or any other abnormalities that could pinpoint a primary cancer. I had 3 biopsies none of which gave them any information. After a 4th biopsy in Feb 2012 my tissue was sent to CA and genetically tested and they now believe there is a 67% chance it is CC. I started with a trial drug and then changed to a Gemzar/Cisplatin combo in Sept. that is what I'm currently on, I have 3 more treatments.
This is definitely a challenging journey but keep thinking positive and continue to research. This is a great site..it has people to help and support you and has great connections for research and helpful hints.

Cathy

Re: My Story

Hi, Daughter,
Stage IVA means "tumor with periductal invasion. In short it means tumor is growing along the intrahepatic bile ducts on both gross invasion and microscopic examination (T4N0M0); or any T (tumor or tumors) with regional lymph node mets present.(any T N1M0).
I am just a patient and not a doctor;but base on your description of your father,
I believe he has the T4N0M0 stageIVA and is correct in its classification and diagnosis.
"normal white blood cells and normal tumor markers" as your message indicated do not correlate with the tumor development especially in intrahepatic cca. due to the fact the liver is a very large organ and the tumor grows alongside the bile ducts and not obstruct the bile flow;since the tumor is not metastasized out side the liver;the bone marrow which in charge of production of the blood cells -WBC,RBC,Platelets etc.is not affected by the tumor at the earlier stage and therefore the labs result will be ,most of time ,normal.
Tumor markers like CA19-9 and CEA in the serum is not reliable and should not be use in the diagnosis stage esp. for ICCA. the best use of the trend of biomarkers are for follow up of chemotherapy treatment effectiveness.
I hope I answer some of your concern about this disease.
Gemox(gemcitabine+oxaliplatin) is an effective chemotherapy regimen,Side effects are not too harsh as gemcitabine+cisplatin and the efficacy is on par if not better than Gemcitabine+carpoplatin.
CT scan after the "determined cycles" that has to take ;along with the trend of the tumor markers will provide the info. for the  doctor's evaluation for the next step of treatment for you father.
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: My Story

Hi:
Sorry you had to find us this way. I was diagnosed 2 years ago with stage 4a. The mets for me were to lymph nodes. The main tumor is in the liver. I also had no symptoms but my CA19-9 was over 80 (can't quite remember what). Bilirubin was 0.7 or so.
I did receive gem/ox. My suggestions are to make sure he has a scarf, warm socks and gloves nearby. There are a few side effects, which he may or may not get. Nausea is one. It can be controlled with meds but I eventually found it easier for me to just give in. I was sick for about 1/2 hour the evening after infusions. Then I was fine.
Almost everyone suffers some amount of neuropathy. Make sure you have room temp drinks, as he will almost definitely not be able to drink anything cold. And a scarf for the cold air... it will hurt his throat. At least for a few days. And gloves help a lot, even when taking food out of the fridge and grocery shopping. I got some stares as my gem/ox treatments were in the summer.
It's a little bit of a nuisance, but beats the alternative! The tumor and lymph nodes responded well to this cocktail, as I hope his does. Please keep us posted and if you have any questions, feel free to ask me. I believe I'm one of the few here that has actually had this cocktail. My email is kjacobson8@yahoo.com.
By the way, just to make you feel better... I'm still not "sick". I've never been jaundiced. I have had my share of "sick days" and had a couple of stints in the hospital for various reasons, but we are keeping cc at bay.

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: My Story

Hello and welcome.  My husband's oncologist told us that some cholangiocarcinoma tumors do not express tumor markers.  This is a problem only in that it makes it harder to determine whether chemo is working.   Although my husband has numerous tumors in his liver, his liver function tests usually are in the normal range.  Blood counts were all normal too but they have been affected by the chemo.  You can learn a great deal here but remember that each person is different and there is a wide range of responses to each type of chemo.  Doctors vary too so definitely look into second opinions.

Re: My Story

Thank you all for such a warm welcome. I am so lucky to have found a group with so much knowledge, advice and guidance. We are in the process of seeking out multiple opinions. And we know that each person and doctor's  treatments vary but sometimes it helps when you hear possitive feedback. It helps stay possitive. He is getting sensitive to cold and nueropathy in his hands. I'm sure its going to get worse in 3 weeks when they give him the ox again. Thank you all for your responses, they really helped understand and know what to expect!