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!

Welcome to the best little family that no one wants to be a part of. 37 is young but unfortunately you will find that there are many on here as young if not younger. I do encourage you to get a second or even third opinion if needed. Many on here have been told that surgery was not an option but then after chemo or seeing another oncologist or surgeon find that it can be. You want to make sure that whoever you are seeing has seen a lot of cases of cc.
As for diet you are right. If you followed some guidelines you would starve to death. I always just recommend to my patients that you eat a good balanced diet with a variety of foods. Protein is very important for many reasons while battling this and often it's the one we don't want to eat. Protein can come from meat, dairy and plant sources such as rice and beans or tofu. We do a lot of protein shakes to keep my husband's up.
You may not have chemo brain so much as stress brain. I didn't have chemo but I find I struggle sometimes with my memory and a lot of the symptoms you describe. The loss of motor skills could be contributed to fatigue. Even if it is related to the chemo you are young and should recover from it easily.
As for relaxing and getting away from this, it's tough. We've been living this for a year and it's tough. I suggest doing something for you that has nothing to do with your cancer. Get a massage. Have a spa day. Take a day trip with some friends. Make a rule to not talk or acknowledge the cancer for a day that way your life doesn't revolve around it. Family gatherings can be tough since everyone wants an update. Are try to do it once then limit talk about it after that. Nights are tough. Using meditation or guided imagery can help push itnoutnof your brain so you can sleep.
Hope this helps.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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

Thank you so much Kris!  I have felt very alone...just me, my mom, and my computer to find answers.  It seems even the oncologist doesn't know the answers to the questions I ask.  I fell it is out of her comfort zone.  Counting the days to getting to MD Anderson.

Thank you for the information about protein.  I was told to steer away from it because it is hard for the liver to process, but that opens up the diet ALOT!

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

Carla -
On the protein bit, one thing that can happen with any liver disease - and this is an liver disease - is that you can get portal hypertension. This is what happens when your liver becomes stiff, hard and difficult for the blood in the portal vein to get through it. This causes a back up blood in your vein which can leak out and cause ascites - edema in the abdomen. Keeping your protein elevated can help pull some of the fluid back in to your veins. No saying that you have or will have that problem but it's good to stay ahead of it. Plus protein is the building block of our body so any healing or fighting that our body does needs protein including making red and white blood cells.
As you can tell one of my soap boxes is diet and nutrition. There are a lot of theories out there about diet....some are backed by scientific research but a lot is not. We all make our choices to eat regular, be vegan or anything in between but we still need to eat that variety for balance.

Hugs,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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

Hi Carla,

Sorry you had reason to find this site, but now that you have, support and love will come your way.

You are young, so try and maintain a positive attitude.  Like Kris has outlined, seek more opinions.

Take care
Lou