Topic: New Member

Hello Everyone,

Boy Im sure glad I found you.  You all sound so supportive and I have found
so much information here.
I was diagnosed this summer with Intrahepatic Chloangiocarcinoma.  I had
only one tumor 4 x 4cm in right lobe of liver.  I was a medical technolgist for
years and active with HLA tissue typing programs on several transplant units
and of course I got Hep B and C.  Docs were watching me for garden variety
liver cancer; so, we were all shocked when I was diagnosed with ICC.  They said I must have had tumor for at least 5 years and it was just showing up
on ultrasound.  All lab tests were normal; but, I felt pretty awful.
I had right lobe of liver removed  at Carolinas Med Center on Sept 17.
Started Adjuvant chemo gemzar/cisplatin Oct 16th and was back at work
Oct 22nd.  They got all of the tumor with no mets anywhere and lymph nodes were clear.  Im finished with chemo end of Feb then first CT scan in March or early  April.'
Here is my question.  Have any of you had continuing chemo after clear CT scan?  My oncologist pretty much blew me off when I brought it up to him.  to say Im worried is an understatement.  I read here that one of you has had 5 recurrances and that the recurrance rate of ICC is very high--75% or so.  Im going to speak to my surgeon about it.  I want to feel like Im doing everything I can.
Any suggestions will be very much welcome!!!
Im still working at almost 70 at very high stress job and I live alone with 3 very active whippets.  We hike a lot even when Im tired.  I don't plan to go down without a fight and all of you have really inspired me!!!

Thanks so much ,
Diane

Re: New Member

Hi Diane,

I am sorry I can't answer your question, but I am sure someone will be along that can. I am very happy to hear you had a resection with a great outcome. I understand your concern about the chemo. I would like to welcome you to this site. I, too am a dog lover. My breed is the chihuahua. I have two and love them so much. The whippet seems like an interesting breed. So sleek and dainty. What are their personalities like? Please keep us updated on your progress. All the best to you.

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: New Member

Diane...First and foremost - congratulations on your successful resection; I too am glad that you have found us.
Maintenance therapy of some kind is on the mind of many in fact, I mentioned it to a large group of specialists focusing on HCC and CC.  Not that a received much of a response however; I believe that putting out such information to those heavily vested in our disease eventually will trigger a response.   Although, at present we don't have any conclusive answers to the efficacy of adjuvant therapy seven of ten physicians prescribe some sort of adjuvant treatments.   A few clinical trials are underway mainly the BILCAP trial conducted in the UK however; we don't expect definite study results until the year of 2014. 
Therefore, dear Diane, I agree with your concerns re: disease recurrence and agree that we don’t like to be sitting ducks (so to say) but finding a physician to prescribe some type of maintenance therapy will be difficult to find. Having said that CC patients are known to be highly informed and often times chose to follow their instincts.  Keep on probing, dear Diane.
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

4 (edited by PCL1029 Tue, 29 Jan 2013 20:38:23)

Re: New Member

Hi,
Please check the links below.

http://www.cholangiocarcinoma.org/punbb … 176#p65176

http://www.cholangiocarcinoma.org/punbb … 942#p67942

It is also a good idea to ask your primary doctor to prescribe antiviral agent such as entecevir 0.5 mg daily for your hepatitis B infection and antiviral medication  for hep C.
I am not a doctor ,but I regard ICCA and hepatitis B,and C , whether chronic or active, are inflammation of the liver. And we need to take care of the inflammation in order to live longer. Adjuvant or long term chemotherapy will weaken the liver to fight the hep. B virus and therefore is my reason to suggest that.
I am an ICCA patient for 45 months with chronic hep. b since birth. Resection twice. I am now on the entecevir for almost 2 years and currently on Xeloda adjuvant for 10 months after the  2 nd resection.and now  I am still on low dose Xeloda twice daily for the past 3 month.
Yes, your oncologist may not agree with you,but it does not mean that he is right or wrong. 2nd opinion on medical oncology from a large institute may help.
God bless.

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: New Member

Hi Guys,
Im not sure how to answer everyone individually.  Maybe someone can
tell me.  DUH.  Im not a techie for sure.
I want to thank you for such a warm welcome.  It means so much to me.
Since my surgery and chemo all but a few good friends and my brother seem
to be pulling away and believe me, Im not a complainer.  Its almost like they
think they will catch something!!

To Pam..  I just love little bitty chihauhuas.  They are so darling.  I have always had sighthounds.  Afghans , Greyhounds and now whipppets in my
old age.  They are velcro dogs and stick to their humans like glue.  Very loving and very fast.  Love to hike.  2 of my whippets are therapy dogs and that is
a big help to me.

To Marion:  Thanks so much Marion.  I didn't know UK was doing another clinical study and I will look into it just so I know.  I have been all over the place looking for info.  I will continue to probe and Im hoping my surgeon
might have something up his sleeve since he is the one who suggested
adjuvant chemo right away.  He is young and pretty much up to date on our disease.  Just a matter of making him sit still long enough to probe him which I intend to do as soon as I have my first CT scan.

To PCL1029
Thanks so much for the links.  I will look at them.  My hep B and C are not
active; but, you certainly have a point about the chronic inflammation and I will speak to my gastroenterologist about that.  I was hoping to get treated with interferon when they discovered the tumor.  I didn't realize that I could still be treated.  No one brought it up to me.

I can't tell you how much I appreciate everything.
Hugs,
Diane

Re: New Member

Hi Diane,

I think the pulling away by friends is a common problem many face with having cancer and I really think that is sad. My daughter has also experienced that. People like to get on with their own lives and really don't like to deal with the downer called cancer. Luckily, Lauren has some close friends that are awesome and a wonderful fiance as well as family that loves and supports her more than anything. Chihuahuas are also velcro dogs that follow you everywhere and always want to be on your lap. We had an Afghan when I was growing up and I have to say although she was beautiful with long, flowing blonde hair, (thus the reason her name was Farrah for Farrah Fawcett)
she was a little weird. Very skittish and afraid of a lot of things such as the ocean, hot air balloons, firecrackers. Plus the grooming was so much work. The Whippet looks a little easier to manage and Greyhounds seem like the biggest loves. I enjoy talking about dogs with you. Actually, the way you answered all of us was perfect. There is no way to talk to one person besides e-mail, but that is the nice thing about this site. Everybody gets to see everything and in the process can jump right in. Great talking to you, Diane.
Take care.

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.