Topic: New to this site

Hi all,

We found out about 3 weeks ago that my father has cc.  He is 62 years old.  He had no symptoms at all.  He had some veins bulging in his groind and mentioned it to his doctor.  They did an ultrasound to figure out what the viens were from.  While doing this, they noticed a dark spot around his liver.  So from the ultrasound, he then had a CT Scan, then a 3D CT scan, and also a biopsy.  We got the results, and our worlds have been crazy since.

We first met with an oncologist, who advised we meet with a surgeon and also sent him for PET scan.  We met with the surgeon, who didn't have the PET scan results yet, who said if it was just the one massive tumor on the left side of the liver then they could probably do surgery to remove it.  He wasn't a 100% positive he would do the surgery as my father also had suffered a heart attack approx. a year and half ago.  So, we left the surgeon awaiting the results.  We then got the results by an email about a week later, he has some little cells on the right side of the liver so the surgery is not an option at this point.  We were crushed to hear this news.  So it was back to the oncologist the next week who advised we would just do chemo and hope that it shrinks them.  So, naturally my mother, father, and I agreed we wanted a second opinion at a bigger hospital.

The oncologist, set us up with other oncologist and Mass General in Boston.  So we went there to meet with them, their opinion is the same, however, they do have a clinical trail phast II chemo drug that they are doing for this type of cancer.  He will be elligilbe for it if the tumor has a certain mutation that about 40% of people with this cancer have.  So now, we are waiting to hear about that.  In the mean time, I took him to Boston (a 2 hour driver) again yesterday to have a port put in.  He will start the regular chemo next week and if he does qualify for the other chemo drug, they will just add that in when the find out.  It's been a very overwhelming journey this far.  I am lucky to have such a close family to go through this with.

Re: New to this site

Hello Amy....Our Peter once said:  welcome to the club no one wants to belong to.  And, may I add; we are so glad to have found. 
By searching out another opinion with a major cancer center you already have made a good decision. 
Our members will help you understand this disease, share their experiences, support and answer any questions you may have.  We are here to help each other. 
I have a few questions:  The mutation mentioned; is it KRAS?
I would also like to mention that our site  offers a listing of clinical trials:
http://www.cholangiocarcinoma.org/clinicaltrials.htm
You may find the above link by tapping the top bar:
Cholangiocarcinoma
scroll down to "Clinical Trials"
Do you know whether the cancer is confined to the liver only? 
Please continue to share with us.  We care.
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

Re: New to this site

Hi Amy,

My prayers are with you and your family, hoping for all good things.  Make memories is all I can say.  It doesn't matter how big or how small they are just cherish all the time you spend with your dad. 

Pearlie

Re: New to this site

Hi Amy,

Welcome to the site. Sorry that you had to find us all and I am very sorry to hear about your dad. But I am glad that you have joined us here as you will get lots of support and help from everyone here. It is good that you are seeking as much information about this cancer, as the better informed you are then the better you will be able to help your dad through this. I was my dads carer too when he went through this cancer so I can so relate to how you are feeling right now.

My dads CC was also diagnosed as inoperable from the start, so again, I can relate to your feelings of being crushed on hearing that news. I still remember how I felt when hearing this news and it was very hard to take. I know that your head will be spinning right now with having to deal with everything, that is natural. But please know that we are all here for you and so know what you are going through right now. I'm sure that you will have questions that you want to ask, so please, feel free to ask them here and we'll do what we can to help in answering them. Please keep coming back here and let us know how your dad gets on with everything.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to this site

Hi,
I am a patient for 36 months now;and I am not a doctor,but  when I saw your message and read about your remarks---
-"We then got the results by an email about a week later, he has some little cells on the right side of the liver so the surgery is not an option at this point."

Is there any chance you can directly quote the "impression section or summary" of the latest PET scan to let me understand what that "little cells" means;I may be of help just in case;if you need privacy,you can email me as an attachment thru this web site.

Have you plan to consult with interventional radiologist to see  whether RFA (radiation frequency ablation)can be done on the right side for that" little cell spots" or may be radioembolization or RFA combined with chemoembolization can be done. If so, you can have the left lobe resection done along with the procedure mentioned above done for the right side to provide you a better treatment plan.-- and this is the only reason I ask for the PET scan  or CAT scan summary.
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 to this site

Unfortunately I don't have the results or wording of the Pet Scan, that is something I don't believe we have.  That is exactly how they stated it to me and my mother.  We have not planned on meeting with an interventional radiologist at this time.  It's so much info, I am feeling extremely overwhelmed, but will not give up on trying to find out everything that I can.

marions: yes we are waiting on the KRAS result for the clinical trial.

I am 30 years old with a 12 year old daughter, who goes to her grandfather's almost everyday after school, as he has a spine disorder, and has been disabled for a few years now.  Beaking this news to her was the hardest thing I've had to do ever.  She is ok with it now, and I am hones with her when she has questions to what I feel is appropriate with her age level.  It amazes me how quickly life can be totally changed in one day.

Re: New to this site

Hi,
good luck and
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 to this site

Hi,
I had a similar situation with my mom. It was a long journey, but make I learned a lot along the way. Be positive, stay strong, and I am here if you need to talk.
Hugs,
Roni
ronidinkes@yahoo.com

Re: New to this site

Thanks!!