Topic: My Mom's Story - ICC

Hello,
I have been visiting your website for information since my mother, age 72, was diagnosed with Intrahepatic Cholangiocarcinoma in January 2013, as an incidental finding.  I feel it time to share her story. 
My parents are a very healthy, active couple and just after last Christmas 2013, my mom was feeling very run down.  She had severe back pain at night and she began to lose feeling in her right foot and was soon not able to walk on her own.  She went to the local hospital and they said she had a stomach bug.  On New Years Day, she was continuing to get worse, so my dad took my mom to another hospital where they did a CAT scan and found multiple lesions on my mom’s liver.  They assumed that there must be a tumor pressing on her spine causing her to not be able to walk. 
They rushed her by ambulance to Mass General Hospital in Boston where they performed many tests over the next week, including a biopsy, 3 CT scans, 4 MRI’s, a colonoscopy, ECERP, spinal tap and they determined that there were no additional tumors but confirmed multiple lesions on her liver.  My mother was continuing to get worse and she lost all feeling, including all her reflexes, all the way up to her mid abdomen.  She was finally diagnosed after a week and a half with a syndrome called GBS – Guillian Barre Syndrome, which is when your body believes it is fighting a virus but instead of attacking a virus it begins to attack your nervous system.  A day later, they had a second diagnoses, the incidental finding of Intrahepatic Cholangiocarcinoma, non-resectable.  They determined neither diagnoses were connected to the other.  They told us she had 2-3 months without any treatment and with chemotherapy treatment about 1 year.  We were at a loss. 
My mother was essentially paralyzed and we tackled that first.  She had the treatment for the GBS and thankfully it began working.   By mid January, my mother had been moved to a rehabilitation hospital and we finally met with her oncologist from MGH, Dr. Jill Allen   She determined that her treatment would consist of Gemcitabine, (Gemzar), three weeks on and one week off to begin the end of January.  Her oncologist chose that course of treatment because she wanted her nerves to begin to heal and repair themselves.  We were nervous, but knew it was the best option we had.  We also introduced many vitamins to my mothers routine including Milk Thistle, to aid her liver to remove toxins, vitamin D, Ginger for nausea (taken 3 days prior and 3 days after treatment), and Tumeric Curcumin.  My mom continued her treatments and her tumor makers steadily decreased with just the Gemzar.  She came home from the rehab hospital mid April and continued to work hard to be able to walk again.  By the summer, she was continuing to respond to her treatment with decreased tumor densities and falling markers and was walking with no assistance by August.  She finally began to feel like herself again.  We also went for a second opinion with Dr. Thomas Abrams from Dana Farber and he agreed to the course of treatment for my mom. 

In November, she had a port placement and had a complication where her lung was punctured.  Since then she hasn’t truly had a full round of her chemo due to low platelets and neutrophil numbers over various weeks.  Also in mid November, her tumor markers showed an increase. My mom was scheduled for a scan on December 19th and the results showed four of the tumors have shown small growth, so Gemzar has run its course.   We were very lucky the GEMZAR had worked for that long. 

Now our options consist of the next line of treatment which is FOLFOX or another option is my mom may be eligible for the clinical trial at Mass General with CABOZANTINIB.  We are leaning towards the trial and feel we will still have the FOLFOX fall back on.   
My mom is asymptomatic in regards to the ICC.  Any ideas or information that may help us decide would be much appreciated.
 
Sorry for the enormous text body but felt all the info was needed ☺
Thank you

Re: My Mom's Story - ICC

Newfound....hello and welcome to our site.  I am glad to see that you have found us and want to thank you for your extensive posting. 
Your Mom has experienced some difficult situations and yet she continues to fight on with a fantastic team cheering her on.  (Your family)

Please know that we are not able to "tell" you what to do however; we are able to share thoughts and experiences which you will need to discuss with the physicians.

Bananafish posted a similar question yesterday re: the Mass. General trial and I thought to include the link:
http://www.cholangiocarcinoma.org/punbb … 730#p83730

Has your Mom been tested for eligibility for the above mentioned trial and has the VEGFR2 and C-MET inhibitor been identified? 

I am sure that others will come and welcome you real soon and share their thoughts with you as well.

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: My Mom's Story - ICC

Wow. What a story... I'm sorry you had to join our family, but you have found the right place for information and support.
Whether to go on a trial or not is mainly up to the patient, if they are eligible. My decision to do it was based on the fact that the new growth that made me eligible was not life threatening. And other treatments had failed. So I was in a great position to try something new!
It is a very personal decision, one which should be made with the advice of the doctors. And, yes, I agree you have a backup plan should the trial fail.

Good luck with your decisions, and please keep us informed. I'm sure we have some info on the trial in our clinical trials section. I can't remember who, but I'm pretty sure someone talked about CABOZANTINIB.

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 Mom's Story - ICC

Hi Nicole,

Welcome to the site.  Glad you found us but sorry you need to be here.  It sounds like your mom has been through a lot.    don't have any answers for you, but I hope that what ever choices are made that they work for her.  She sounds like a fighter and I will be hoping for the best.   Hope you stay with us and update us on her progress when you can.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Mom's Story - ICC

Hi,

1.You did not mention the number and sizes of the tumors; In general, if the tumors are less than or equal to 4 and the sizes are <3cm each; and if the locations are allowed  for microwave ablation or RFA ; then this route may be a lot easier to take instead of FOLFOX chemotherapy. Please consult an interventional radiologist for this option first if possible.
2. I believe Mass Gen hospital will automatically  do a biopsy of  the ICCA tissue sample and have done a Foundation One report for the tumor already. Is that why they(MGH) suggested your mother may be qualified for cabozantinib clinical trial. if so, then I will go for the clinical trial first. ; it is taken by mouth, far much easier than FOLFOX.

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 Mom's Story - ICC

Hello,
Thank you for all your responses  smile

My moms oncologist at Mass General does feel that she will most likely be eligible looking at her records/levels and and feels my mom should fit all the criteria.  If my mom decides to participate in the trial, she will go in with her consent form next week to start the process and hopefully begin the trial by mid January. 

I am not sure about the following question:  has the VEGFR2 and C-MET inhibitor been identified.  I will research and try and find that out.  Would it be in her medical records?

The way they explained the tumors to us is there are multiple tumors freckled throughout her liver.  Many lesions (>50) are poorly defined and measure in mm but there are 4 tumors that measure in cm.  When we met with the radiologist last January, the largest tumor was 4.8 cm and located close to her stomach.  Over the year,  they the tumors have reduced in size and density, so we asked during last weeks appointment to have the radiologist take another look to see if any radiation therapy would be a viable option at some point in the future.

Re: My Mom's Story - ICC

Hi,

You can find the results under gene testing for C-met/VGFR2 .
Base on your mother's liver pathology, chemoembolization or  segmental radioembolization will be the best choice for such case. Instead of asking for a oncology radiologist for consult, you should also ask for an interventional radiologist consult since that is what they specialized in radioembo and chemoembolization..

However, according to NCCN guidelines, for advance  unresectable
cholangiocarcinoma, clinical trial is recommended whenever possible.

So you mom still have 2 options to choose from.

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.