March 3, 2015 at 2:14 am #87035mbachiniModerator
Here is the link to the clinical trial
There is contact information at the bottom, and I encourage you to contact them and gather more information. I will let you know that in order to qualify you have to have failed the “standard of care” therapy, which in my opinion is ridiculous in this disease. You also would have to have resect able tumors in order to harvest the cells. I can tell you that they are working very hard to perfect this treatment and I am hopeful for the future of immunotherapy……just wish it would happen faster. I hope this helps a bit. Thank you for your prayers!! They are the best medicine in my book! Take care….MelindaMarch 3, 2015 at 1:25 am #87034
That you for sharing your experiences and including our son in your prayers. We’ll include you and others from these discussions in ours.
As I am learning more of this disease, his tumor is actually perihilar CCA or a Klatskin tumor. I’ve posted that topic under general discussions on the site.
A question for you- how were you included in the NIH trial? I have read some on the topic and it appears promising.
FredMarch 3, 2015 at 12:41 am #87033mbachiniModerator
I also would like to welcome you to this site and I am sorry to hear of your son’s diagnosis. I also would like to add that I was diagnosed at age 41 with Intrahepatic Cholangiocarcinoma over 5 years ago. I have had a resection, reoccurrence, about 2 years of chemo and for the past 3 years I have been on the Immunotherapy trial at NIH with great results. Please don’t lose hope! I will keep your son in my prayer and will hope for great scan results. Please keep us posted.
MelindaFebruary 28, 2015 at 11:27 pm #87032jathy1125Spectator
Fred, Welcome and sorry you had to find us. I am excited to tell you I am 51/2 years cancer free.
I have an amazing story to share and keep it posted http://www.catherinedunnagan.com There is HOPE!
I noticed you are in Texas so hopefully you are being treated at MDAnderson with Dr. Javle. Dr. Javle has many success stories on this forum. My “HERO” is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I share my story to give HOPE but also to honor my donors and put Dr. Chapman’s name out there, he is an amazing doctor and and even more amazing man. Dr. Chapman has been able to change at least 4 members of our CC family from inoperable to operable. I suggest when you are ready for another set of eyes on your son’s choices, he be at the top of your list.
Please feel free to contact me if I can help.
Lots of prayers-CathyFebruary 28, 2015 at 9:08 pm #87031marionsModerator
Fred…..Intrahepatic cholangiocarcinoma develops in the smaller bile duct branches inside the liver. Rate of occurrence: 1 in 10.
Klatskin Tumor (also called Hilar or Perihilar Cholangiocarcinoma) develop where the hepatic duct join and are just leaving the liver. This is the most common of type of cholangiocarcinoma making up 6 to 7 of 10 bile duct cholangiocarcinomas.
For diagnostic purposes physicians combine CT and/or MRI results, pathology report (if applicable) blood test results and the overall symptoms of the patient.
Some believe that CT is more accurate in confirming CCA whereas other physicians prefer MRI readings. Basically though, I believe, that scan results are as good as the operator interpreting the readings.
I hope for others to chime in as well.
MarionFebruary 28, 2015 at 6:55 pm #87030
All- thank you for your thoughts and comments. It does appear to be a very confusing disease. We will continue to be active in these discussions to learn from you all and to share our sons experiences.
He has been diagnosed with intrahepatic CCA where the left and right hepatic ducts join to become the common hepatic duct and the term Klatskin tumor has been mentioned. It may be a stage III or B and even IV.
The MRIs and CT Scans have not been conclusive but indicate that there is a 3cm ill-defined mass in the lateral segment of the left lobe.
What tests are best to “see” this tumor and are there any special protocols that should be used.
Thank you for your support- FredFebruary 28, 2015 at 6:54 pm #87029gavinModerator
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your son, but glad that you have joined in with us here as you are in the best place for support and help and I know you will get loads of each from all of us here.
Thanks for letting us know what your son has gone through so far and my fingers are crossed for the best possible news from the CT and MRI results. Please let us know what they show. There is not much that I can add to what the others have said to you and you will find tons of very helpful info in the links that have been given to you.
Please keep on coming back here, we are all here for you and we care.
My best wishes to you and your son,
GavinFebruary 28, 2015 at 1:17 pm #87028herculesModerator
Fred, I was fortunate to have a tumor discovered in my left hepatic duct (right where it emerges from the liver) and had resection surgery Jan. 06′ at which time my oncologist felt chemo was not effective for my case, so my only treatment was surgery by a skilled surgeon called the best liver man in the area by my gastrointestinal doctor. He had written numerous books on liver surgery and transplantation, he is now retired and hopefully you can find a man with great experience in this field. I am able to do everything I did before diagnosis other than lift heavy objects. I am blessed in many ways, other than a big ugly scar that resembles a mercedes benz emblem that spans my abdomen you might not know anything ever happened here. Hope for the best, your son is young for a cc patient, hopefully he will heal well and have positive results as I have. Use common sense, eat healthy , avoid chemical solvents and toxic atmospheres, fatty foods make the liver work, I avoided them before surgery. I know it is difficult, but try to avoid stress, that is my treatment and advice in a nutshell, I hope your son does well, God bless, PatFebruary 28, 2015 at 5:50 am #87027marionsModerator
dhometexas…..I would like to follow Hercules and Lainy and welcome you to our site. This disease is puzzling, but as Hercules mentioned, newer therapies are under investigation and many promising developments are heading our way.
In order to help understand this cancer, Lainy’s attached links are of great value. The biliary book allows for a good overall read and the Registry provides additional de-identified information from others treated for Cholangiocarcinoma. If indeed your son has been stented to allow for drainage then the biliary information card is of importance as well.
You may also find the attached video of interest. Please note that the statistics mentioned take in account the overall outcome of all patients with Cholangiocarcinoma and your son may very well be in the upper curve of the equation. Many, many patients do very well with resections and/or appropriate treatments and there is no reason to believe that your son will not fair equally as well.
If you don’t mind please share with us the type of Cholangiocarcinoma and the stage of your son’s diagnoses.
Most of all, fingers and everything is crossed for a fantastic and positive results of the upcoming MRI and CT scans.
MarionFebruary 28, 2015 at 3:25 am #87026lainySpectator
Dear Fred, welcome to the best place to be for CC support. So sorry to read about your son, we as parents hate to see our kids get a cold let alone a rare and strange thing like CC. My husband had a Whipple surgery and when the tumor grew back 3 years later he had Cyber Knife. He was DX 9 years ago and of course now there are new treatments and trials popping up. Where is your son being treated and PLEASE keep that 2nd treatment in your thoughts as we are big believers in 2nd and 3rd opinions. Hoping that your son shows a decrease in tumor size as surgery is the best option. Here are some links you may find useful:
Free complimentary Book or e-mail download:
Biliary drainage – stent information card
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/February 28, 2015 at 2:03 am #87025
Pat- thank you- if you don’t mind me asking, what treatment did you receive? That seems to be the most confusing part of treating CCA.February 28, 2015 at 12:47 am #87024herculesModerator
Fred, welcome , there are many here who understand your fear, I for one was diagnosed at 49, which I felt at the time was too young. That was over nine years ago, and medicine is making huge strides on many cancers. Keep the faith, hope for the best, one challenge at a time, don’t be overwhelmed by it all, and be his key support person. He will be in my prayers tonight, PatFebruary 27, 2015 at 11:54 pm #10982
…… was diagnosed with CCA last November 2014 and has completed 2 rounds of radiation from the M6 Cyberknife and 2 rounds of GEM/CIS. He just completed an MRI and a CT Scans to see if it has decreased the size of the tumor. In December it was determined to be border line resectable.
We should get the results of the imaging tests next week and hope and pray that it has decreased.
If it not resectable, we plan to get a second opinion.
Any advice at this point in our son’s life would be appreciated.
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