What now?
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notdoneyet….I don’t have much to add to Percy’s and Nancy’s comments, but wish to say “hi” and welcome you to our site.
The drop in tumor markers is more than remarkable; congratulations on the fantastic results. Your son is young and healthy and has a strong Mom advocating for him, you are a great team.
Please know that most of the information on this site focuses exclusively on the disease of Cholangiocarcinoma, but I wanted to mention that biliary cancers include pancreatic cancer, gallbladder cancer, cholangiocarcinoma, and cancer of the ampulla of Vater, all are different forms of cancer. Therefore, in order to obtain the most disease specific information, you might also want to reach out to a gall bladder discussion group.Although personally I am not familiar with any specific group; this link might also be helpful:
https://www.google.com/#hl=en&gs_nf=1&gs_mss=gallbladder%20support%20&tok=FG4-BCY-NCvOux9avpvVzg&cp=25&gs_id=42&xhr=t&q=gallbladder+support+group&pf=p&sclient=psy-ab&oq=gallbladder+support+group&gs_l=&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.&fp=9fb6d01f807b1173&biw=1093&bih=471Most likely you already have this information, but I thought to include this link:
http://www.cancer.gov/cancertopics/pdq/treatment/gallbladder/Patient.
Tons of good wishes are heading your way.
Hugs,
MarionHi,
Surgery is the only potentially curative treatment for Gallbladder cancer.(GBC)
The possibility of surgery depends on the stage of the cancer; the number of lymph nodes involvement(ie: the more the #,the less the possibility);the extent of the liver metastasis(ie: liver mets is an absolute contraindication for surgery in general);and occlusion of major vessels due to the GBC.Mayo Clinics,memorial Sloan-Kettering are two hospitals that have studies done on GBC and have more “radically resections” performed for the patients; therefore presume that they will have more experience or expertise on this radical resection compared to other hospitals. 2nd opinion for GI (ie: gallbladder or hepatobiliary specialist)consult in either one of the above named hospital is recommended when the tumors are shrunk enough for both the liver,pancreatic tumor and lymph nodes.
At this point ,I do not think Whipple or liver transplant are the option for your son. But the good thing is the” age risk factor ” is favorable for your son(only 30 years old); the other good things is that he responses to Gem/CIS chemotherapy so far without any major side effects and the tumor marker CA19-9 decreased substantially; and the best thing of all is that the tumors are shrunk and hopefully it will continue to do so.
Keep in touch and
God bless.One more question to PCL1029, what would make him a candidate for surgery? And what would it be…..the Whipple or a Liver Transplant? Thank you so much for all the help and everybody being here. This is such a little known cancer!
He is receiving Cisplatin and Gencitabine. And yes there has been recession in the lymph nodes. I don’t have the numbers right now. I found out his Ca19-9 was at 110,000 when we arrived and now it’s at 3000.
I saw on this site where a woman called Jathy had transplants and is cancer free. I was hoping and wishing………
Thank you for the help. The learning curve is sharp. I describe my entire life like the fellow who puts a plate on a stick spins it then does another and another, etc. I’m that plate spinner and I’m scared if one drops I lose my child!Hello Notdoneyet, Yes you are on the right site. Biliary tract adenocarcinoma is cholangiocarcinoma. I can understand your heartbreak when finding out this diagnosis. We have other young people on this site who are responding well to chemotherapy and other treatments. Many also pursue naturopathic support as well. There is lots to learn and choices to make. I am glad you are happy with the care he is receiving now. Sounds like he is responding well to his chemo. Keep the hope and let us know how your son is doing. We are a compassionate group here with all sorts of knowledge from different angles. Sending best wishes to you and your son. Nancy
Hi,
first and foremost, I am only a patient and absolute not a doctor.
Base on your description, most likely your son has stage IV biliary tract adenocarcinoma.
Surgery at this point is still not possible.
Systemic chemotherapy and/or with targeting agents similar to bile duct cancer are the choices , Hope is always there but this is a very difficult road to travel through. it requires patient, courage and knowledge; more or less like a rollar coaster ride than a rocky drive.
Can you tell me what is the chemotherapy your son is on?
tumor regression is good news;
are there any shrinkage on the lymph nodes and on the pancrease? by how much %(ie:>25% in shrinkage?)
Keep in touch,
God bless.This is my first post ever anywhere on anything so please excuse any mistakes I may make. My son was diagnosed with 80% gallbladder cancer and 10% biliary duct and 10% unknown. The official diagnosis is METASTACTIC BILIARY TRACT ADENOCARCINOMA. This nightmare started the first of May we did not find out it was even cancer until May 23. Stanford and UC Davis were not moving fast enough ON ANYTHING. I brought my son to the Cancer Treatment Centers of America in Phoenix Arizona. They sent a second biopsy off for molecular/DNA testing and that’s how we found out.
He will be completing his first session of chemo next week.
My questions:
Do we belong on this site?
We’ve been told surgery is not an option due to mestasized to liver ,fully involved, small tumor on pancreas and lymph nodes. Any hope?
Cat scan performed yesterday was TERRIFIC all tumors in liver are responding and receding. He had had little to no side effects from chemo and Nuelasta shots. He has lost 35 lbs, mainly muscle. This is a 30 year old, health conscious, healthy lifestyle well muscled clean living Caucasian male. Any help or direction would be appreciated. By the way, we love CTCA So professional compassionate and tests are done immediately with immediate results! No days of stressful waiting. We arrived June 1 with my son in a wheelchair within two weeks he was walking after physical therapy and correct pain management.
Sorry this is so long. But I’m a desperate heart broken Mom trying to save my son!!!Jim-I once again will mention that the reason I qualified for transplant was because of the location of my tumor being in operable. I can only suggest again to call Dr. Chapman, he will take your call and he does “miracles”!! Barnes hospital also was just ranked #6 and ranked #3 for cancer treatment.
Please contact me if I can help. I am proof there is HOPE!
Lots of prayers-CathyHi,
Here is a practical solution and hopefully everything is going your way.First thing in the morning, call Mayo Clinics and ask them to redirect all your records to Dr. Gregory Gores, in the liver transplant unit and ask for him specifically to review your wife’s case,
Open the link below ,under Dr.Gores’s Picture use the email link to send him a Note.(I mean one or two sentences ,indicate you had sent records to Mayo Clinics and express your desire to request him kindly to take a look for your wife’s case for liver transplant possibility AND other surgical options that he can provide if transplant is not an opinion)I mean a few sentences , be PRECISE, just like what I write above in the () will be fine.
He is a nice guy and he will reply to your email in a day or two.
the link is:http://mayoresearch.mayo.edu/mayo/research/staff/gores_gj.cfm
God bless.
Hi Jim, Sorry I don’t know much about liver transplant protocol but others will be sure to chime in. That is good that you will get a second opinion from Mayo and maybe others as well. I hope you can get more answers tomorrow from the oncologist. This is a frustrating disease and one that is difficult to determine the best line of defence. Wishing you all the best. Nancy
Well we received the news yesterday that it is CC & at the same time found out that my wife Denise is not a candidate for transplant at UCLA due to the tumor being a couple cm to far from the liver where it has the main portal vein encased. We have an appointment with oncology Dr. Knoph tomorrow in San Francisco, & I have been calling USC, UCSF, Stanford, Mayo & MD Anderson. Only got a call back from Mayo so I just started to fax her records to the other hospitals trying to get a response. Should I be doing something different here? The mass is 36mm and located at the bifurcation of the bile duct. She has 2 stents in 1 in the left and 1 in the right duct. I don’t understand why it can’t be a transplant due to that location. Does anyone have any info on a living donor transplant as I am blood type “o” and very willing. I just feel like we don’t have a lot of time and that we have kind of wasted the last month here messing around.
Feeling frustrated,
Jim
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