New ICC Diagnosis — Looking for Advice
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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
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
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/viewtopic.php?id=5975My 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.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/prof-peter-lodge/profile/
Good luck – I hope this helps.
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.
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
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&dadThat’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
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.
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
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/colleges/medicalschool/departments/surgery/Documents/New%20Surgery%20Chair.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,
MarionMlayton,
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, WillowMLayton,
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 CraineHi. 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
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