Topic: New ICC Diagnosis -- Looking for Advice

My wife Lisa was diagnosed with Stage 4 intrahepatic cholangiocarcinoma on May 30, 2013.  Lisa is 43 years old with no risk factors and is in excellent health otherwise.  Obviously, the diagnosis came as a complete shock.  Her only symptoms have been moderate abdominal pain and general fatigue for the past several months.  She attributed the fatigue to the busy lifestyle of a mother with two small children (ages 1 and 4).

After an initial ultrasound identified multiple liver masses, a CT was ordered.  The CT revealed four distinct masses - a very large tumor occupying most of the right lobe and extending into the left lobe measuring 15x12x13, as well as three smaller tumors in the left lobe measuring 2, 2, and 5.5 cm respectively.  The right portal vein is completely encased by the large tumor and the right and middle hepatic arteries are also compromised.

A subsequent biopsy confirmed the diagnosis of cholangiocarcinoma.  Additional imaging (CT, MRI, EUS, and PET) revealed both regional and distant enlarged lymph nodes; however, no additional metastases have been identified.  A biopsy of the distant (aortacaval) lymph node was positive for cholangiocarcinoma. 

We were referred to a GI oncologist at our local university medical center in Portland (OHSU) for consultation.  We learned that transplant is not an option due to the intrahepatic nature of the cancer.  We also were informed that resection would be unlikely because of the size of the main tumor, the multifocal involvement, and distant lymph node metastasis.  The standard treatment of gemcitabine and cisplatin was recommended.  Our oncologist discussed the potential for future treatments depending upon the chemotherapy response, including ablation, embolization, and regional chemotherapy via an intrahepatic pump.

We scheduled a visit at the Mayo clinic in Rochester the following week for a second opinion.  The Mayo team (oncologists, hepatologist, and surgeon) agreed with the initial diagnosis and treatment plan.  While at Mayo, a second biopsy was taken for genome testing with the hope of developing some targeted therapies based upon the unique pathology of the tumors. 

We also had a phone consultation with an oncology surgeon at Sloan Kettering.  The surgeon at Sloan is confident that Lisa could be a candidate for resection if we are successful in shrinking the tumors.  The Sloan team recommend starting with regional chemotherapy instead of the systemic approach.  As we were scheduled to begin the standard systemic chemotherapy the next day, we chose to stick with our original plan and perhaps travel to NYC for further evaluation depending upon the response to the first few rounds of treatment.

Lisa has successfully completed her first two chemotherapy treatments and so far has tolerated them well.  Her symptoms have not changed much in the month since the initial diagnosis with the exception of increased fatigue 2-3 days after chemotherapy.  She still has a fair amount of pain from the installation of her port a few weeks ago.  We will have the first “post chemo” scan in another month.

Last week at our second visit with our oncologist, we learned that the local surgical team would be willing to consider Lisa for resection depending upon her response to the chemotherapy.  After initially being told that resection would not be an option due to the distant lymph node metastasis, the tumor board discussed her case and they concurred that one positive node would not render her unresectable.  We were also told that the lymph node could be removed during the surgery.

In addition to the opinions of the OHSU (Knight Cancer Institute) team, The Mayo Team, and the Sloan Kettering team, our medical reports and scans have been reviewed by a family friend who is an interventional radiologist at Loma Linda Medical Center.  Our friend reviewed our results with his colleagues as well as a prominent surgical oncologist.  The Loma Linda team assisted in the initial diagnosis and agreed with the findings above. 

Lastly, at the advice of a CC survivor and frequent poster to this site, we have sent our scans to Dr. Selby at USC for an additional (and technically the 5th) medical opinion.  We have heard great things about Dr. Selby and are anxious to hear his opinion and recommendations.

We had an appointment scheduled at MD Anderson immediately after our Mayo trip, but we cancelled the trip because Lisa was so exhausted after so many tests and procedures in such a short time. 

Obviously, we have learned a lot about this disease in the past month; however, after reading the posts on this site I realize that we still have much to learn.  I would welcome any thoughts, recommendations, words of wisdom, or treatment protocols that have worked for others with similar circumstances.  Lisa and I are very motivated and determined to fight this cancer.  My purpose in posting to this board is to leave no stone unturned.

Thanks for reading, and best of luck with all of your respective journeys.

Re: New ICC Diagnosis -- Looking for Advice

Dear Mlayton,

I am sorry that you have had to find this board but want to welcome you to it.  I love your attitude and the fight and determination that you and Lisa have.

There will certainly be others along soon that can help with treatments, resections and chemo.  The knowledge and wisdom on here is quite amazing and you have come to the best place for answers and support.

Clare

In the stars now . . . .

Re: New ICC Diagnosis -- Looking for Advice

mlayton,

Welcome to the site, but so very sorry you had a reason to be here.  Sounds like you are in full fight mode and doing all the things that need to be done so you know that you have all avenues open to you.  You are a fantastic advocate for your wife.

I had Extrahepatic CC, so I don't have much to add to your knowledge about treatments for your wife's condition.  I am sure others will come along and have input for you.  I just wanted to say hello and welcome.

Best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New ICC Diagnosis -- Looking for Advice

MLayton,

It sounds like you are doing a fantastic job researching and advocating for your wife.  I am in a very similar situation advocating for my wife as well (age 45, locally advanced ICC, no symptoms, 2 kids...very similar).

I realize you have been bombarded with amazingly bad news lately, but one piece of good news that I saw in your post is that resection is a potential option.  The research suggests Gem/Cis has a pretty good chance of stablizing the disease for at least a while, and also has a decent chance of shrinking the tumors. 

One regional chemotherapy you might look into is Drug-Eluting Beads with IRInotecan (DEB-IRI). 

Here is a presentation that discusses the procedure:

http://www.biocompatibles.com/uploads/d … /APP20.pdf

There are some papers noted in the presentation that are worthwhile to track down.

Here is a clinical trial evaluating the procedure:

http://clinicaltrials.gov/ct2/show/NCT01648023

Even though this is all based at U of Louisville, my understanding is that this procedure is more widely administered.

This seems like a good option in general, but what made me think of it is that you seem to be choosing between systemic and regional therapy.  One interesting aspect of this treatment is that they are now explicitly combining systemic gem/cis chemotherapy with regional DEBIRI therapy.

If the name of the game is to get a chemo response to facilitate resection, then a combined regional and systemic approach might be something to look into.

Of course, I am not an oncologist, and you should not make critical decisions based on my advice, but I do think it is something you might ask your doctors about.

Good luck,

Jason

Re: New ICC Diagnosis -- Looking for Advice

MLayton,

My wife's situation mirrors your wife's prognosis. While a bit older (56) she was in great health and very active. She was diagnosed in mid April with ICC, very large tumor plus several small tumors in the liver, lymph nodes impacted. Surgery not an option.

I applaud you for sticking to your plan and getting treatment started. From my personal experience, I now believe that for anyone diagnosed with advanced ICC, chemo needs to start quickly to stop the aggressive growth and shrink the tumors. Time is truly of the essence. We found this out because 3 weeks after the initial diagnosis, she had to be hospitalized for intense pain. In those three weeks, all tumors had grown significantly as did the lymph nodes. We have now completed 3 cycles (6 treatments) and feel progress is being made.

My recommendations to you are 1) continue to stay close to the amazing people on this board - they have helped me greatly, 2) research possible trials now and in the future, and 3) learn as much as you can about Immunotherapy. That's what I hope to do while preparing for the results of our first CT scan and the following meeting with our oncologist.

My best to your wife as she goes through this ordeal and to you as her caregiver.

Carl

Re: New ICC Diagnosis -- Looking for Advice

Dear MLayton, welcome to our extraordinary family but sorry you had to find us. You are a CHAMPION as a husband and as an advocate! I have to ask myself WHY? Why are so many people in their 40's and younger getting this Monster we call CC. Why so many from the West Coast? You have certainly done your homework and your head must be spinning. Honestly once you get your game plan your fright will turn to fight and you have come to the right place. Listen to your gut as it will steer you to the right plan. I know you will be hearing from a lot more members so hang in and BE STRONG!

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 ICC Diagnosis -- Looking for Advice

Hi,

So good to see you on the board. Welcome. The support here is wonderful.  Both of you continue to be in our thoughts and prayers.

Mark and Jeannemarie

Re: New ICC Diagnosis -- Looking for Advice

Hi.  I also live in Portland, Oregon and have intrahepatic CC.  I had a resection 2 yrs ago and had it removed.  I received adjuvant chemo and radiation at OHSU.  Dr Vaccaro is my oncologist.  Please let me know if I can be of any assistance!!  I am 33 now.  Diagnosed at 31.

take care,

Susie

Re: New ICC Diagnosis -- Looking for Advice

MLayton,
I am 49 and was diagnosed with ICC. I have had two liver resections, several different chemos and steriotactic radiation. If you or your wife would like to talk that would be wonderful.
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

Re: New ICC Diagnosis -- Looking for Advice

Mlayton,
Im from northern CA and my sister, age 50 has ICC diag Aug '12. She sleo has a you g boy (9). My advice is to go for aggressive tx that can lead to possibility of resection. That window of opportunity is hard to find, though not impossible. Usually the dictirs start with systemic Gem Cis but I like the idea of a combo of regional chemo and systemic. Seems while theyre focusing regionally, microscopic seed cells can be metastasizing, so systemic chemo can help control that. My sister had Gem-Cis  chemo, radioembolization with yittrium 90 and now a different chemo (Xeloda). What works for one may not for another person and even different tumors within same person can respond differently to treatments.  It sounds like you're leaving no stone unturned and getting lots of professional opinions, which is great. You're a very good advocate for your wife and a loving husband. I'm shocked at the younger ages of so many diagnosed since I've been on this board. The history on CC reports that its more of a cancer that strikes people over 60, so I'm really frustrated to know that ICC incidence is increasing .what's causing this?...edpecially in those w no known risk factors. I'm digressing. My heart goes out to you as you navigate this nightmare while raising such young children. Please know you're not alone and there is hope.
Sincerely, Willow

Willow

Re: New ICC Diagnosis -- Looking for Advice

MLayton....I too would like to welcome you to our site and compliment you on the impressive work you have done so far.  Being that you are on the West Coast and realizing that your wife is exhausted from fighting this cancer in addition to the numerous trips she has taken, I am hesitant of adding more work for you however; you may want to reach out to this surgeon also.
http://www.ucdenver.edu/academics/colle … 0Chair.pdf
Not sure whether he is able to look at the medical records only (I assume that you are keeping copies of everything) but if you are so inclined to contact him, he may prove to be a valuable choice. 
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 ICC Diagnosis -- Looking for Advice

Hi Mlayton,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear what your wife is going through. But I'm glad that you've joined us here as you're in the right place for support and help and I know you'll get a load of each here.

Nothing much that I can add to what the others have already said to you, but I wanted to welcome you here and say hi. You are so doing everything right here in seeking out further opinions and information about everything. The better informed you are the better and more equipped you will be when it comes to making decisions etc.

Keep doing what you both are doing and please let us know how everything goes for Lisa. We are here for you both and will do our best to help in any way.

My best wishes to you both,

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 ICC Diagnosis -- Looking for Advice

Wow.  Thanks so much to all of you for your kind words of support and encouragement as well as the very helpful tips and advice.  It is reassuring to know that my wife Lisa is not alone in this fight.  After a month of reading various posts to this board, it is nice to finally make personal connections. 
I am amazed at the level of medical knowledge and sophistication that you all possess.  My head is still spinning from my research into all of the various treatment options, facilities, doctors, etc.  Reading about your personal experiences and knowledge that you have gained certainly has helped to make some sense of this very complex labyrinth.

Jason – we have a lot in common.  Thank you for sharing your knowledge and experiences.  I was not aware that we could potentially purse the local and regional chemotherapy options concurrently.  I will definitely discuss the DEBIRI protocol with our oncologist.  I’m happy to hear that your wife Andrea seems to be responding to her initial treatments.  I believe we both have the same hope of becoming a candidate for resection at some point in the future. 

Carl – thank you for sharing your experiences thus far; our circumstances are quite similar as well.  It is reassuring to hear that we did the right thing by starting chemotherapy right away rather than delay treatment.  You stated that surgery is not an option for your wife Lynn.  Would you mind providing further details?  I will also be curious to hear about your experience at Memorial Sloan Kettering.  Dr. Fong at Sloan is so far the only surgeon who believes that my wife is a candidate for resection (the official tally is 3 no’s, 1 yes, and 1 maybe).

Susie – it is great to hear about another CC survivor right in our hometown.  We actually had an appointment with Dr. Vaccaro, but we chose to see Dr. Lopez at OHSU because he was able to see us a week sooner.  My wife was diagnosed during the ASCO meeting and just about every GI oncologist in the country that we contacted was in Chicago and not able to see her right away.  Do you know anything about Dr. Billingsley at OHSU?  If Lisa becomes a candidate for a resection, he would be the one to perform the surgery.

Lisa – thanks so much for providing your contact information and agreeing to speak with my wife – also named Lisa.  We visited your caringbridge site and were blown away by your amazing journey and your strength and determination.  Lisa would like to reach out to you directly in the near future.  Your story has become an inspiration.

Willow – you are an amazing advocate for your sister.  She is very lucky to have you in her corner.  Thank you for sharing your story.  I am sure your sister can relate our difficulties in managing this disease while raising young children.  It is comforting to know that there is also great hope for those who are not candidates for resection.

Marion – thanks for the tip regarding Dr. Schulick.  I previously lived in Denver and would not mind getting back there for a consultation.  As the biggest question mark for my wife is whether or not a resection is possible, I do not believe that you can have too many opinions from the top liver cancer surgeons.

Re: New ICC Diagnosis -- Looking for Advice

That's funny.  I chose Dr Vaccaro because she could see me a week sooner than Dr Lopez!

I do not know any of the surgeons at OHSU.  I had my resection in Pittsburgh at UPMC, because I used to work there.

I also went to Mayo for a second opinion.
I hope she continues to handle chemo well.
Keep us posted!

Susie

Re: New ICC Diagnosis -- Looking for Advice

Dear Matt & Lisa,
We are sorry that you have had to become part of the CC Family. After our son's CC diagnosis, finding the CC Foundation & Family was the best thing to happen to us.

We are happy that liver resection is still a possibility for Lisa. We are also glad that she has been able to tolerate chemo.

Dr. Selby is an excellent physician and surgeon and a caring compassionate man. Our experience with Dr. Selby was a very positive one. We took our son to Dr. Selby who attempted a liver resection when other doctors would not.

Stay strong and keep turning over those stones. God Bless.

Bob & Nancy
jeff'smom&dad

Re: New ICC Diagnosis -- Looking for Advice

In my wife's case, there were (are) multiple masses all around the liver, plus a large tumor near the middle. In addition, there are lymph nodes affected. This combination prevented surgery from being an option. The primary option was Gem/Cis treatment plan, although Folflorinox was recommended as well. We opted to start with the current "standard" and have gone through 3 Gem/Cis cycles. Visible improvements are there - her abdomen has decreased in size by several inches. And the pain management is going well, so well that we've reduced the amount of pain meds.

We meet with the local oncologist on Tuesday, July 8 to review the CT scan and talk about the treatment plan ahead. We will also travel to NYC on Friday for our meeting with Sloan. We are both quite anxious for that visit.

Carl

Re: New ICC Diagnosis -- Looking for Advice

mlayton,

My dad is being treated by Dr. Jarnagin at Memorial Sloan Kettering who I believe is Dr. Fong's Boss.

MSK is an amazing hospital and the Liver/Bile Duct team there is outstanding. While I do not know Dr. Fong directly, Dr. Jarnagin is a brilliant well respected  surgeon (Mayo suggested we do the surgery with him rather than at Mayo) and I would be very confident with anyone in his department.  The level of organization, attention to detail and focus on patient care at MSK is truly amazing.   My dad is 13 weeks out of resection surgery and is doing great.   If you decide to come to NY for treatment, please let me know, I am happy to help in any way that I can even if it's just someone to have coffee with (though I can also be helpful with the nurses on the liver floor, we're tight)

For what its worth, I would suggest using a surgeon as close to home as reasonably possible.  This surgery is tough and requires a great deal of follow up even with great outcomes.  That being said, finding a doctor who is GREAT and who you feel comfortable with is paramount.

I wish you the best in the long and difficult journey.

Re: New ICC Diagnosis -- Looking for Advice

Hi....this man is based in the UK but will review documents & scans online.  He is considered to be a world expert in CC, he is on the American Board for biliary illness.  He is regarded as the "last resort man", I know that doesn't sound great but when other "experts" have ruled out treatment he is sent the cases for final review. My sister in law was diagnosed with stage 4 intrahepatic cc aged 41 and 4 surgeons reviewed her scans and said treatment wasn't viable.  Prof Lodge intervened and said that he would perform a laporoscopy to be absolutely sure that resection wasn't an option.  He is a "piping" expert and this is his field.  Sadly, in our case there were other complications & resection wasn't possible.

I'd rather you had his details than not....his secretary's details are on the link and he is good at responding promptly.

http://www.spirehealthcare.com/leeds/pr … e/profile/

Good luck - I hope this helps.

Re: New ICC Diagnosis -- Looking for Advice

Hi,
Lisa Craine reached out to me, and thought I could be of help. She thought of me because Dr. Fong was my surgeon, and i may have some valuable information and insight for you. I LOVE Dr. Fong. I was being treated at MSKCC for 2 years, and have the liver infusion pump. See thread about this.
http://www.cholangiocarcinoma.org/punbb … hp?id=5975

My onc was Dr. Nancy Kemeny. There are many posts about her, too. Being nice, I will just say I hope you spoke to someone else. Although if you can handle her, she is one of the best.
Anyway, please feel free to call or write with ANY questions about Sloan, Dr. Fong, Dr. Kemeny, the pump, this stinking journey we have to be on, or whatever. My last 2.5 years are pretty well documented here, or on my blog at caringbridge.com/krisjacobson.
My number is 267-625-9873. And my email is kris00j@gmail.com.
I am no longer being treated at Sloan, however. I have joined a clinical trial at Fox Chase Cancer Center in Philadelphia, and so far, so good!
I hope Dr. Fong is able to help you. Keep the faith, think positive thoughts, and know my thoughts are with you.

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: New ICC Diagnosis -- Looking for Advice

I was diagnosed in Dec 2012 with stage 4 CC and am being treated at MSKCC.  Chemo started in Jan. with Gem/Cis and after 2 consecutive CT scans at 3 & 6 months the tumors have not grown or spread.  I have also had a 2nd opinion from Jefferson University Hospital who confirmed diagnosis and agreed on treatment as best available.  It has been tolerable and is working. 

Lisa is so young to have to fight this, but stay strong and keep up the great research you are doing.  Knowledge is power. 

Eric

Re: New ICC Diagnosis -- Looking for Advice

Hi mark and Lisa,
I've thought about you guys lately. I just had my second treatment up at Ohsu today. So far tolerating it well. I hope all is going well for Lisa. We would love to meet up or email or chat if you guys are ever up for it. We are so close to one another wink

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

Re: New ICC Diagnosis -- Looking for Advice

Eric,
Thanks for your encouragement.  Who is your oncologist at MSKCC?  We are primarily making the trip to see Dr. Fong for an evaluation for a HAI pump as well as an opinion regarding surgical resection.  We will also be seeing Dr. Harding for a medical oncology consultation.  We have heard many great things about Dr. Fong, but have very little information on Dr. Harding.

Thanks again for your reply, and we hope that you continue to have success with your treatment.

Kind Regards,


-Matt

Re: New ICC Diagnosis -- Looking for Advice

Matt, send me an email venice711@gmail.com with your phone and I'll give you a call later today.  If you need a place to stay near NYC we have room.
Eric

Re: New ICC Diagnosis -- Looking for Advice

Matt,
Good luck with your visit to Sloan.

Carl

Re: New ICC Diagnosis -- Looking for Advice

Good luck tomorrow! I'm thinking of you! Tell Dr. Fong Kris Jacobson (really tall woman) says hi! Lol

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.