My dad newly diagnosed questioning treatment choices
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Hello Kathy. I’m sure you’ve been hit like a ton of bricks by the words CC and I’m sure you have a lot of questions. First of all, every case is different as every individual is unique. My advice is to take the info you have been given by drs with a grain of salt and then march on to find a brave & intelligent dr to tackle your dad’s case. No one person, oncologist, surgeon or patient can hand you the right answers. They can only provide statistics, case scenarios and opinions, all of which provide no concrete answers. Believe in your heart & mind that a cure is possible & then succeed at doing just that. I also had an inoperable 10 x 10 cm tumor. I had failed treatment with Gemzaar and Cisplatin. I sought the expertise of many physicians only to be told that there were not any good options left. Refusing to believe this, I continued to search for someone who believed that my life was worth living. My never-ending persistence paid off and finally led me to an amazing man, Dr. Tomoaki Kato. He is affiliated with Columbia/Presbyterian Med. Ctr in New York. A google search of his stories will amaze you. I am alive today because of one man’s belief in the importance of human life & the belief that anything is possible. Although I do not know what the future holds for me, as I am fully aware of the recurrent nature of this disease, I can tell you that I am currently 8 mos out from surgery and doing well. Dr. Kato performed ex-vivo surgery on me, which basically entailed removing my liver entirely from my body in order to remove my tumor. 3/4 of my liver was removed, along with the enormous tumor. My jugular vein was also removed & replaced the left portal vein, as well as a synthetic vein which replaced my vena cava. A lot of reconstruction was done & a lot of healing was needed, but the bottom line is my tumor WAS OPERABLE – maybe not to anyone else, but it was to Dr. Kato. Please contact his office. He will let you know via phone if your dad’s case is able to be handled by his expertise. Not every case is, but it sure is worth finding out. I wish your dad much luck in the search for a cure & will pray that he becomes one of the many miraculous statistics. Please keep me posted. If you would like any further info regarding Dr. Kato or my case, my email is kcirucci@msn.com. God bless.
Hugs, Kim
Hello 2kids…welcome to our site. We have seen, on this board, for therapies to be delayed by days or even weeks. If it were me I would not be too concerned but, let’s see what others have to say. Acquiring a second (or more) opinion always is advisable. Many physicians have limited experience with this cancer therefore; you would want to make sure to consult with a doctor treating numerous patients. Where has your husband been diagnosed?
All my best wishes,
MarionMy husband was diagnosed with CC last March 18th and he’s supposed to start chemo on March 31 but we canceled since we’re seeing another doctor for a second opinion. Are we doing the right thing? Would delaying his chemo for a week make a big difference?
Kathy, you are so right, we do not listen at all to statistics! We have a saying here that we try to remain realisticly optimistic! We do have quite a few members here who are beating the odds. Good attitude and a Doctor who is very familiar with CC are key. If the time ever comes that something does not feel right to you, then you ahve the right to other opinions. Good luck to your dad on Tuesday and please keep us posted.
Polly has your husbands tumors/cancer shrunk at all or held the growth at bay? Dad is starting the Cisplatin and gemcitabine chemo on Tuesday.I am praying for good results.The surgeon still feels surgery is too risky.His tumor is not where we all had thought.It is more central in the liver and is touching in all 3 lobes.He still has no symptoms and no blockage in the main bile ducts.Hope we can keep that from happening.This is so hard to believe he is even sick.I am grieving his illness before he is even sick.He is so hopeful and declares he will beat this.I hope he is right.When the average statistics say most people live 6 to 12 months after diagnosis it scares the hell out of me. I need to learn not to listen to statistics I guess if I want to remain hopeful.
Kathy,
My husband has been on Cisplatin and Gemcitabine for 8 rounds (16 treatments) and it is working very well with few side effects. Tired and feeling under the weather seem to be the worst of it.
Encourage you Dad to give those drugs a try first.
Kathy- Since the tumor is contained I would start asking about transplant doctor. A transplant should be discussed. I suggest you contact Dr. Chapman at Barnes-Jewish Hospital in St. Louis MO. I received an email from a man whos wife was a patient of Dr. Chapman and would like you to read it. I can forward it to you if I have your email adress. I will post it later when I figure out how to do it, but right now I do know how to forward!! It has some interesting comments about Ohio”s transplant program.
I like your dad had no symptons, just itchy.
Lots of prayers-Cathy jrdunngan@gmail.comKathy – Would your father consent to a second opinion at the Mayo Clinic in Rochester, Minnesota? They are one of the best around……
We live in a suburb of Cleveland, Ohio.The Ireland Cancer Center at University Hospital is very noted for their cancer programs,but I am not sure regarding CC.There are several members of what they call a “tumor board” made up of oncologists,surgeons,etc that meet on Mondays to discuss difficult cases.They have been reviewing my dad’s case. He will be starting chemo soon.He is not symptomatic and is feeling great.He is very strong at present.The cancer is contained in the left lobe of the liver only.
Kathy – I don’t know about cure, but I have heard great things about a holistic natural approach with food. Best wishes.
Kathy-like everyone else sorry about you having found us. I am a cc survivor,due to a transplant. I under went all the chemo and radiation protocol to qualify. My doctors hope for chemo was to stop it from spreading, he did not expect a lot of change in the tumor with chemo and radiation.
This cancer is so rare you really need to make sure you are treated by someone who has dealt with it. Give your geography and people will provide you with great options. This is a cancer that needs second and third opinions unlessyou are lucky like I was and was miracously put in the care of one of the best, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
You can read my story at thetelegraph.com under christmas miracle. I am approaching my two year cancer free anniversary, not an easy journey but I am making it..Keep posting on this site you will get so much direction, understanding and information.
Feel free to contact me if I can help.
Lots of prayers-Cathy jrdunnagan@gmail.comKathy – Honestly, I do not know the answer to your question. However, from the time I have been on this board, most of the folks who have had success with this disease have had surgery. Chemo as a first treatment can help lead to potential surgery as needed. Each person who presents with CC seems to have different situations and medical needs. The most important thing is to have a doctor/hospital who are VERY familiar with CC. Where is your dad being treated? – Nancy
I was wondering.Is there anyone who has beat this cancer bby any other means than surgery? I keep hearing that surgery is the only curative answer for CC.Is this true?
Dear Kathy…I would like to follow Susan and welcome you to our site. I am sorry to hear of your Dad’s diagnoses. As Susan has mentioned a second and/or third opinion is highly recommended. The Gem/Cis combination has become somewhat the standard of treatment for biliary cancer however, other treatment are also being used. What we have seen lately is a combination of drugs showing promise in the treatment of biliary cancer. The AZD217 clinical trial is rather new therefore; I don’t recall anyone on this site undergoing this trial at present. Here is the link: http://clinicaltrials.gov/ct2/show/NCT01229111.
Before your Dad enters a clinical trial you may want to arm yourself with information. This site will help you understand: http://clinicaltrials.gov/ct2/info/understand#Q01
Others may also want to share some information with you. Please, continue to reach out to us as we all share a common goal….we are fighting this cancer by staying hopeful and realistic.
All my best wishes,
MarionDear Kathy – Gemzar/cisplatin is a very common treatment for CC. Have you gotten second or third opinions? We highly encourage that you do that. Also if you go to the National Institute of Health website, you can get a lot of information on clinical trials that are available. Best of luck to you and your family. Blessings, Susan
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