January 16, 2017 at 11:13 pm #69365
No, Alikemal, I have not had chemo, I had a resection surgery (70% of liver removed) gal bladder and partial duct resection . At the time my oncologist recommended that I forgo chemotherapy . He said there was no effective chemo for my cancer. I take an anti inflammitory drug that seems to open up my bile duct and has kept things working for a few years now. No stent, no further treatments whatsoever since Jan. of 06′ . I have said it is, perhaps, the best outcome one could ask for. My digestion and functionality were perfect for maybe 8 or 9 years. I have had some bilary restriction issues that for now have been kept in check with the Meloxicam. Take care, PatJanuary 16, 2017 at 9:21 pm #69364alikemalParticipant
hercules do you get chemo ? how was is it ?
marions what are targeted drugs ?December 18, 2016 at 11:47 am #69362
Ubri, I understand that many people are more fearful of chemo than the cancer itself. I have gone to local cancer support groups and sat with people that are receiving chemo treatments at the time and some get relief from symptoms of the cancer. Everyone is different and every case is unique in some way but similarities are many. Perhaps attending a local cancer support group would give you the opportunity to talk with people getting treatments and tell you first hand the good and bad. There are herbal products that claim to help the body fight cancer, but once a tumor has formed it becomes a more difficult battle. I hope You find a treatment soon, Do what you must do, surgery is not easy either but one must do whatever it takes to stop or slow this cancer. I wish you the best, PatDecember 17, 2016 at 10:47 pm #69361marionsModerator
positivity….. Education is a powerful tool. It helps us understand and based on that understanding we are in a position of making the best choice possible.
Choosing a center treating a high volume of cholangiocarcinoma/bile duct cancer is key to obtaining a second, professional opinion. USC in Southern California has a robust hepatobiliary department and the physicians: Dr. Lenz and Dr. Dr. El-Khoueiry are two oncologists “very” familiar with this cancer.
It is unlikely for you Mom to be offered chemotherapy or perhaps any other targeted drugs unless her bilirubin is at 2, hence I am hoping for the stent to do the job it is meant to do.
I much agree with your complaint about the failed stent procedure. We know that stents can migrate and can cause problems including cholangitis, ulceration, bleeding, and perforation, and as you mentioned physician errors have horrible consequences. So sorry.
You are a good daughter by advocating strongly for your Mom in the way you do. I hope your Mom is feeling significantly better and you are able to connect with a specialist real soon.
MarionDecember 17, 2016 at 10:14 pm #69360positivityParticipant
Thanks for your response. My mom recently was diagnosed and I am scheduling appointments with Oncologists. She only saw the GI doctors for the MRCP, ERCP procedures and a diagnosis based on what they saw from scans. They diagnosed the same before the pathology reports. I was extremely displeased with the first GI doctor who did the ERCP, and she did not do a thorough job which another doctor had to redo the ERCP. My mom also experienced complications from the first ERCP which made her more sick. It’s extremely important that people choose a very experienced GI doctor for an ERCP, this takes more knowledge, skills, and tools than your basic procedure.
I am looking into City of Hope , UCLA, and does anyone know about Cedar Sinai? I am glad to hear that there is better treatment today. I am in the beginning stages of looking for treatments since my mom is definitely not a candidate for surgery, liver transplant, or chemo. That’s a good thing! I feel those will make her worse and not worth it. This is due to her age and anemia.
Thank you!December 17, 2016 at 6:58 am #69359marionsModerator
Ubri…..I am trying to understand, does your Mom have cholangiocarcinoma and you too have been diagnosed with this cancer?
MarionDecember 17, 2016 at 5:40 am #69358ubriMemberUbri wrote:My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I’ve been going to MRI,ct scans and even 2
Liver biopsy…I am going to try the apricot kernalls instead of chemo.What do you people think about that.Would you do the chemo..HelpDecember 17, 2016 at 5:38 am #69357ubriMember
My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I’ve been going to MRI,ct scans and even 2
Liver biopsy…I am going to try the almonds instead of chemo.What do you people think about that.Would you do the chemo..HelpDecember 16, 2016 at 4:26 pm #69356lainyParticipant
Dear Positivity, where is your Mom being treated and is the Doctor an Oncologist VERY experienced with CC? CC is still so new that many in the medical profession have not even heard of it. The key is to be with an experienced Oncologist. We have come a long way since my husband had CC over 10 years ago. There is research being done and new trials coming along all the time. There is no reason for your Mom to not be getting good treatments. I think you mentioned before that she is seeing a GI or a GP and she really needs an Oncologist. Best wishes to you and your Mom.December 16, 2016 at 3:44 pm #69355positivityParticipant
That is incredible! Wonderful for your recovery!
I never imagined to be here or learning about this condition. I didn’t even know anything about bile ducts,not a part of the body you commonly know about. Until my 74 year old mom , out of nowhere was diagnosed with Klatskin tumor, adenocarcinoma. I still want another pathologist to look at tissue sample, although two GI doctors diagnosed it as this before the biopsies. It was determined from the “bad location” which they love to emphasize. It is at both left and right hepatic ducts at the common duct, and before biopsy said she is not candidate for surgery. Even better, I would not want her to go through the torture of surgery as she is already weak from a current anemia. The liver mass was found during an MRI to look for the source of anemia, and instead this was eventually found and finalized through ERCP. The GI doctor also said she is no candidate for chemo, which is also good since she is not strong to handle chemo. This is tough, but there must be some treatment which boosts the immune system, as I think this is what needs to strengthened, and doctors need to look at patients as individuals and not use the same treatments for everyone.
I can’t believe there is no research or studies dedicated to this cancer compared to other cancers. I feel there is not enough advancement and know that oncologists make most money from chemo treatments. I disliked the GI doctors for being extremely negative, and basically didn’t do anything ,but give a diagnosis. Once GI doctor didn’t even have the decency to call and report to us the diagnosis of Klatskins. The only way I found is by getting the pathology report by my own effort, and no doctor involvement.
Again, it’s incredible since I am in the beginning stages, to hear success stories.September 25, 2016 at 4:51 pm #69338lainyParticipant
OK CC Family, I HAVE A GOOD ONE THAT AFTER 8 YEARS we still double over with laughter. My Teddy “relocated ” 5 1/2 years ago. He was a true Sicilian and after he was DX he started wearing his CC bracelet. He could NEVER pronounce Cholangio. We had company from Milwaukee and went to our favorite Italian restaurant. Rocky (yes Rocky) asked Teddy what was on his bracelet. Teddy says, “Oh that’s my Cancer”. Rocky says, “No I meant what does it say?” Teddy answers, ” Angelo Carcinoma”. Leave it to my Teddy to make a Sicilian our of his Cancer!! I thought I would choke trying not to laugh at the time. And, YES, HUMOR is the best way to get through bad times or any time.
Our humor at CC was during his DX. He was very jaundice and I looked at the ONC and Teddy and I said, “You know I don’t like you in yellow!” That time they cracked up.September 24, 2016 at 1:16 am #69340mvprattParticipant
Loraine So glad to provide a laugh because we certainly need them right. ha ha I know that I tend to do as much laughing as I can… I think it is good for our souls and provides some levity to our so serious lives.
I look forward to hearing others stories so I too can have a good laugh and celebrate how we all are surviving this cancer one day at a time
MichelleSeptember 23, 2016 at 10:42 pm #69339lorrainedavisParticipant
sitting in chemo session 5 right now, love all these stories, they help so much. Michelle you made me laugh, thank you!
LorraineSeptember 22, 2016 at 3:21 pm #69342maikkiParticipant
Eleven years a survivor is truly something to celebrate! I am a one year and nine month survivor, but who’s counting? I also had PSC, but that was considered cured also, as I had a liver transplant to remove my intrahepatic cc tumor as that was the only option. I can only hope for you that you continue to feel well and the PSC does not cause a recurrence. I believe attitude and strength is half the battle and you clearly are living a life that is healthy and happy. It is people like you who make it easier for the rest of us to believe we can also make it 11+ years post diagnosis. Thanks!September 17, 2016 at 12:26 am #69343
Michelle, I am sorry, I read your reply before your incredible story, and you are spot on, you are alive and living, you have so much to live for, and your strong outlook is everything, I was very lucky in so many ways. I believe positive karma is a huge part of our outcome. We don’t lay down and let it happen, when necessary I will take chemo or anything they advise. I am not afraid of the future, but only hopeful. All along I have dealt with this unsure but hopeful. My outcome has been by far better than most, but there are those here who have had great success with chemo, and other treatments. We must evolve and learn from those who had success. I have always wrote value every day and use your survival instinct to guide you every day. I hope your battle continues to be a winning fight, Pat
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