Topic: New to all this....and SO LOST!

I am a 37 y/o woman with no significant past health history aside from an elective gastric bypass with removal of my gall bladder 15 years ago.  3 weeks ago (after suffering severe abdominal pain for about a month), I FINALLY found a doctor who decided to look a little deeper into my situation, rather than assume I was seeking pain medications.  I was diagnosed with Cholangiocarcinoma.  It is Intrahepatic. (I still don't know if this is good or bad....seems to depend on the article you read).  AND my tumor is 20x12x22cm within my liver.  There is no lymph node involvement, and according to the remainder of vast tests performed, I am otherwise healthy.

When I was presented with my diagnosis, I was also informed that I have 2-14 months to live.  I was told it was not curable, it was not a candidate for radiation or surgical options, and the only option I had was to partake in Chemotherapy as "palliative care". 

I live in Arkansas, there are no large cancer centers in the state, so I cant help be very skeptical of this prognosis and statement of such limited treatments.  I have plans to go to MD Anderson in Houston, but this has been put off due to insurance purposes.  Now the insurance issues are resolved, but now I have to wait until my current oncologist completes her first stage of treatment and reaches a point of re-evaluation.

Here are some of my major questions at this time:
1. I hear this is an extremely rare cancer and even more rare due to my age of 37.  Any suggestions on what to do during the waiting time to get to MDA?

2.  I have read so much about supplements and diets, Im lost on this also.  Seems if I followed all their advice, I would be limited to water and asparagus (but im not supposed to lose weight, remember lol).  I would love any input on what has worked for others.

3.  My Chemo is Gemzar and Cisplatin.  I have had very little side affects of the chemo, thankfully, with the exception of having notable issue with concentration, memory, irritability, and both gross and fine motor skills (I stumble around a lot, and Ive noticed my hand writing is shaky and runs down hill).  Is this what they call "chemo brain"?  and does it really kick in after only 2 treatments?

4.  How do you relax and get this off your mind for just a little while?  Ive started exercising lightly, and trying to learn meditation.  I do the meditation attempts at night mostly mainly because the music at least is a help to relax and otherwise I am wide awake most of the night with thoughts running thru my head over and over again.

5.  ANY tips you wish you knew at this point is welcomed. ANYTHING to help me find a path that hopefully leads to survival...but at the very least...one of serenity and understanding of what I have, what to expect, etc.

Thanks, in advance, for your time and input!  Carla

Re: New to all this....and SO LOST!

Carla, Welcome and sorry you had to find us. A second opinion is very important, our cancer  is very rare and many doctors are just not knowldegable in treating this cancer.
I am a CC survivor and my miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Thanks to our CC forum I have been able to put his name out there and at least 4 people have had there non-surgical diagnose changed. Dr. Chapman is so much more  than a great doctor, he is a kind passionate man. Dr. Chapman is also phone friendly and knows time is not our friend and will get things moving quickly, he also will not have you go through  the expense and time of coming to St. Louis if he couldn't help you.
You can read my story under the loose leaf section of our forum. Please contact me (618-567-3247) or email if you would like to talk or if I can help.
Lots of prayers-Cathy

Re: New to all this....and SO LOST!

Carla,  I'm very sorry to hear that you have been diagnosed with ICC, but you have come to the right place for both emotional help and information.  I was also newly diagnosed with intrahepatic CC, but with a tumor much smaller than yours (5 cm).  I know that I've read personal stories of people with much larger tumors that have been shrunk by chemo over a period of time and even some who have been able to have surgery after the tumor had shrunk enough.  If you aren't at a major cancer center, you need to get to one.  I personally wouldn't wait, but I don't know all the details of your situation.  When I was going through the diagnostic period, I finally got irritated with the delays, waiting 5 days for a pathology and then no real answers, so I initiated an appointment with Mayo Clinic in Rochester, MN, even before the last of the testing was done.   Mayo Clinic took the leftover biopsy material and in less than four hours, had redone the entire slides and reread them...something my hometown pathologists couldn't get done in less than 5 days.  There's no excuse for delays like that, but unfortunately, it's the way most smaller town medicine works. (I live in an Iowa town of 150,000+ and it's still small town medicine.)  I would encourage you to do as Cathy suggested and try talking with some of the CC "super doctors," such as Dr. Chapman and others via phone for a phone consult.  Speed really is important with this cancer.   If you ever need to unload....there are many of us here on the forum who will listen without judgment. This forum has some of the most caring people in the world on board and either they or a friend or family member has or is going through what you and I are.  I just signed on myself, but already, I know that I can come here and there will be someone who understands and responds.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: New to all this....and SO LOST!

Hi Carla and welcome to the site.  Yes this cancer is still considered rare yet it unfortunately is on the rise and is starting to get noticed in younger adults as well.  I was diagnosed with Intrahepatic Cholangio in July of last year and I was 34, mother of 2 and felt exactly how you are (turned35 in March smile )  My tumor was about 17-18cm when finally diagnosed.  I too was told inoperable, no lymph involvement, and it was all contained in the liver.  They started me on Gem/Cis in August and mine was able to shrink enough in it's location and I became a resected candidate in January of this year. A lot of mine had to do with the location of where my tumor was and was contained all in one lobe.Do you know where your tumor is located? And to answer a couple of your questions...How do you relax and get this off your mind? I am sure we all have our different outlets and some days it is much more difficult to "take a break" from the world of CC. I try to do things to keep me distracted and busy.  When I have my kids that is pretty easy to do they keep me on my feet.  I also started taking lots of walks and little hikes and listen to music.  I also take medication for anxiety when feel needed which also I find really helpful and helps sometime take the edge off or let's my mind relax for a minute. As far as tips to continue your journey...You are off to a wonderful start and it seems like as much as you have gone through over the last little bit that you have a very strong determined positive attitude.  Get as educated as you can about this disease (hence why I am so grateful for this site)  and try to get multiple opinions.  You just never know that one might have different info and input than the other.  So continue what you are doing smile You are definitely on the right path and we are all here to support you and answer any questions you might have.

Hope, love, strength...2013 and for the years to come, Porter.

Re: New to all this....and SO LOST!

Dear Carla, welcome to our remarkable family, you have come to the right place. To shorten this note I totally agree with the posts above. We are a curious group here and I am wondering if it is the insurance company holding you back from the 2nd opinion until you are reevaluated? I am glad you are going to go to MDA as it is one of the best for CC. You always want to make sure you are being treated by an ONC who is experienced with CC. We do not listen to numbers as none of us were born with expiration dates stamped on our feet. Try hard to take each day at a time as stress does not help heal your body. Much good luck to you and please keep us updated on your 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 to all this....and SO LOST!

Hi Carla,

Welcome to the forum although I am sorry that you have been diagnosed with this disease.  I echo what others have said - get a second opinion at a specialist centre.  Everyone here will help you as you start to understand this disease and support is always here.

X

Clare

In the stars now . . . .

Re: New to all this....and SO LOST!

Hi Carla
Welcome to our wonderful family. A second opinion is a must, the sooner the better. I would make sure that your second opinion is with a multidisciplinary approach; also make sure the group of doctors has treated CC before. The sooner you feel confident about your treatment plan the sooner you will be able to breathe. Please call me anytime if you want to talk.
330-903-6868
Lisa Craine

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