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Hello everyone -
This site is a wonderful source of information. My mom (57 years old and otherwise very healthy) has been diagnosed with intrahepatic cholangiocarcinoma. She has a 5cm tumor in the caudate lobe of her liver. Currently surgery is not an option due to its location as it is near the portal vein and hepatic artery. Her oncologist has started her on gemzaar/cisplatin. She has weekly chemo on Fridays, 2 weeks on
Dear Jason, welcome to our wonderful family. You mentioned you were only 200 miles from Rochester so you might to think strongly about getting a second opinion there as they are like, the ultimate when it comes to CC. The Chemo cocktail your mom is on, Gem/Cis, is the popular one of choice right now. I am glad your Mom is doing pretty good with the chemo and it also good that the ONC mentions you have choices down the road. Sending you best wishes, you have come to the right place and please keep us posted.
Dear Jason...a warm welcome from me also. Don't you wish we could have met at a ballgame instead? I agree with Lainy in that searching for a second opinion definitely is worth the extra effort. This disease warrants numerous expert opinions and those opinions generally can be obtained from physicians affiliated with major cancer institutions as they can draw from the knowledge obtained from a larger patient pool. The current course of action may very well be that of choice however, you would want to be absolutely sure of that. It always is advisable to request copies of all medical records everything pertaining to your Mom
Thank you for the replies. We have copies of her pathology report, MRIs and PET/CT scan. I will check into the referral process to Mayo in Rochester. I do have a question about which tumor markers should be tracked with this type of cancer. I've read on the forum about CA19-9 and 125 markers, but that is a question that we did not ask. Jason
Jason-Welcome, and like the rest sorry you had to find us. I am a CC survivor. My CC was inoperable because it involved portal vein and location
. I am alive today and cancer free (2years and 2 weeks) because of a clinical trial involving a liver transplant. The fact that your mom's has not spread is one of the qualifying criteria. I was treated at Barnes-Jewish Hospital in St.Louis MO. by Dr. William Chapman. Dr. Chapman worked with the Mayo-Clinic in developing this trial. I suggest you contact Mayo or Dr. Chapman about being a candidate for transplant, most doctors are still undecided about this as option, but trust me it works!! (I had 2 transplants!!)
Please read my story at thetelegraph.com under christmas miracle. If you would like to contact me please do.
Thanks to God and Dr. Chapman, and two wonderful strangers I will visit your wonderful state this summer, for my first "motorcycle vacation" since my diagnosis on July 31,2008. There is nothing like the smells and sounds of the black hills during Sturgis to make you feel alive!!
Lots of prayers and HOPE-Cathy
We called the physician today and asked if they had checked her CA 19-9. The insurance denied the test as they said it was experimental. However, mom paid for the lab test and it was 1 and they said anywhere 0-30 is normal. We're wondering why it is not higher as she has a 5cm tumor...is this normal? Jason
Jason, I cannot believe that the Insurance Company would not cover the CA19-9. Anyone please correct me but isn't that test included in all the LAB work?
We never paid extra for that and I am positive it was included. The Cancer Markers are just that. An infection can make them for high, it does not have to be from Cancer and is not exact in diagnosing. It just helps when the ONC is putting all test results together. Jason I am so glad you are going to contact Mayo. Was Cyber Knife ever discussed. A tumor has to be under 7cm and your Mom's definitely is. Cyber Knife is painless, and one of the easiest to go through. Its quick with only about 4 days of treatment versus weeks of treatment or surgery. You are doing a great job and please keep us posted.
Lainy, I've read about CyberKnife on this website but it was not discussed at our initial surgical visit. I will contact the surgeon's office to see if they provide this option. I visited CyberKnife's website and noticed that most centers are not affiliated with any direct cancer center. Can you contact the CyberKnife location directly to see if you are a candidate for the procedure? Thank you. Jason
Jason, Cyber Knife is still fairly new but many more Hospitals have it than even 5 years ago. Your doctor should be able to tell you where you might be able to go if he deems it could be done. There are also some C.K. clinics set up now in various cities. Price would depend on your insurance company. If you Google C.K. a whole lot of information will come up for you. Much good luck on this. Oh, and the ONC has to set it up for you just like anything else, with a referral.
Hi,
please email me if you have any more questions; again sorry for the delay.
BTW,may I ask how your mom discovered she had CC in such an early stage?
by accident or related to other health problems?may I ask what stage is your mom'CC?
God bless.
We have not been told what stage as of yet. That is one of the questions we asked the oncologist yesterday but haven't heard back.
Her CC was discovered accidentally. She had blood in her urine and her family physician ordered a CT scan since she had a kidney stone 4 or 5 years ago. He prescribed an antibiotic which cleared up her symptoms. Fortunately, she is a nurse and decided to have the CT scan to make sure there wasn't a kidney stone. Although there was not a kidney stone, the radiologist detected this abnormal mass which led to her MRI w/o contrast, MRI w/ contrast, biopsy and then PET/CT scan. Thankfully she had the first CT scan otherwise we would have never known there was a problem as she is asymptomatic with normal labs.
She called the lab yesterday and found out that her CA19-9 value is 1 but do not have a CEA value that we are aware of.
Hi,Jason,
I think the treatment plan for your mom now-that is 12 weeks of gem/cis is a good choice;after that if chemoembo and RFA combined treatment can be performed ,it will be perfect. But remember, recurrence is very common,and it can recur at NEW locations;so after the MRI with contrast, and before the combination treatment, make sure there are no new lesions on the liver; and if so surgery is always a better option if it can be done.
Stage I(T1,N0,M0) or StageIIa is my guest.
Tell your mom she is very lucky and God is watching over her.
and tell her don't worry too much about the side effects,it will come but she can tough it out.
Ask her to use her connections (being a nurse in her profession)to talk to the doctors, her peers,the oncology nurses to gain insight about her disease. If they do not know,they are always very willing to find resources to help their peers and that is very valuable. This is how I get my free consultations and I found that is very useful in knowing the uptodate condition of my CC.
I always thank God for discovering my CC early enough that I can still work,get treatment and do research for CC at the same time.Now thru this foundation,I can learn even more and up to date for CC treatment and related subjects for me and all of us. This is not what I planned for my retirement,but if God choose this way for me,I will have no regret.
God bless.
As always,the above is for information purpose only ,always consult doctors first.
Jason...in adding to the above discussion I would like to mention that those people lacking Lewis antigen (a blood type protein on red blood cells),the CA 19-9 will not be elevated. So, I would not worry about it too much.
All my best wishes,
Marion
Hi Jason - I went to Dr Kay Reid Lombardio at Mayo in Rochester - I also was diagnosed with Intrahepetic Cholangiocarcinoma - my tumor was sitting right on top of both main arteries in the liver - Dr Kay was fantastic - it was a very delicate surgery trying to get around the arteries - She ended up cutting my liver in half - removing 50% and left both arteries in tact - I would recommend you check into Mayo - they may be able to help your mom. Best wishes to you and keep us all informed on how things go! Val
Hi Jason ~
I was reading through your post as you indicated your mom was diagnosed with intra-hepatic CC (my dad was diagnosed w/the same not too long ago) and I was surprised to see how the doctor's were able to diagnose early. I say surprised, because blood in the urine was the reason my dad went to the doctor and basically how it all started. I haven't seen it as a symptom or possible symptom for CC in the different things I have read... makes me wonder how many other individuals have this initial symptom before getting diagnosed.
Wishing your mom and your family all the best during this time.
Lourdes
Lourdes....the blood in the urine may have been related to other issues, but the ensuing testing may have lead to the diagnosis of CC.
All my best,
Marion
Mom had surgery today with Dr. Chapman at Jewish Barnes in St. Louis. The surgery took almost 10 hours as he resected 75% of her liver and reconstructed the portal vein. He said things went well and no new lesions were detected during surgery. He was able to directly attach the main portal vein to the left branch. The remnant liver tissue looks healthy and that up to 90% of her liver will return. He believes that the lymph nodes were clear but we will have to wait 7-10 days to get the pathology report. Based on the pathology report, she may (or may not) need to complete adjuvant chemotherapy. She is in ICU tonight for observation and will go to a recovery unit for 2-3 days. Dr. Chapman expects that she will be in the hospital for 7-10 days. Thank you for all of your prayers. This site has been a wonderful source of information. Jason
Jason a big shout out...YIPPEE. I am so very happy for your Mom and I wish her a speedy and uneventful recovery. It does not get any better than this, just wonderful!
Dear Jason,
I am so happy your Mom was able to have surgery. I will pray that her lymph nodes will come back clear. Wishing her a speedy recovery. God bless you and your Mom.
-Pam
Jason- YEA!!!!!!! I am so glad for your mom. 7-10 days means a hospital Thanksgiving, boo!
I am so glad Dr. Chapman was there for you. Pay it forward and keep putting his name out there so more people have HOPE.
I will be near the hospital saturday at the "Hill" so if you need lunch or a visit call (618-567-3247)
Lots and lots of prayers-Cathy
Jason, thanks for the good news, now onward to recovery!
Patty
Jason.... fantastic news. During open surgery the surgeon has the ability to detect the true extent of the disease. Dr. Chapman
Hi Jason,
Thank you for letting us know how your mums surgery went, this is excellent news indeed!! I am so glad that it went well and I wish your mum a very speedy recovery indeed. Please keep us updated on how your mum does.
Best wishes to you and your mum,
Gavin
Jason, a great day for you and your mom. It is just awesome to be able to share in Great news on this sight. Keep up the good fight and give my best to your mom and I pray for her speedy recovery and for her hospital bed to treat her well. I just spent a night in the hospital 2 different times in the last 3 weeks and the hospital bed was by far the worst part of everything I experienced. :0)
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