Dad recently diagnosed

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  • May 4, 2011 at 2:31 am #50060
    pcl1029
    Member

    Hi,
    I forget to mention that” gastrointestinal perforation”(ie,colon perforation,liver abscess) is also a side effect for that clinical protocol due to the molecularly targeted therapy drug Avastin,which received the BOXED WARNING on 5/2009.
    (about 2.4%)
    God bless.

    May 4, 2011 at 1:21 am #50059
    jathy1125
    Spectator

    Jeff, Welcome and sorry you had to find us. I am a cc survivor! I was 52 and healthy when my “ton of bricks ” came down on us. I also was inoperable. I was very lucky because I was diagnosed at Barnes-Jewish Hospital in St. Louis MO by Dr. William Chapman. The hospital is one of the few cc centers and Dr. Chapman is a the most amazing man and doctor you will ever encounter, I am only alive by the grace of God and him. I ended up having 2 liver transplants!! You can read my story by going to http://www.thetelegraph.com under Christmas miracle . Since you live in the midwest I would contact his office.
    Please feel free to email if I can help or answer any questions. I will be 3 years cancer free May 24,2011!!
    Lots of prayers-Cathy (618-567-3247)

    April 30, 2011 at 11:00 pm #50058
    lainy
    Spectator

    Hi Jeff and welcome to our wonderful family. Ton of bricks, mack truck, bus..you name it, they all work. I can tell you honestly that as soon as a treatment plan is set in to motion the fright turns to fight. We also have quite a few Stage IV members who are doing well. You have already been given the best advise on Doctors in the above posts, I just want to say that you have come to the right place as we all care. Please keep us posted on Dad and best regards to him and your family.

    April 30, 2011 at 10:51 pm #50056
    pcl1029
    Member

    Hi,
    I will try to answer if you don’t mind. Suggestions for questions 1-6.

    1. Dr. Bloomston is a very good surgeon;Dr.Saab is very informative and patient
    in answering your questions.Google their names at the top right hand corner of this web site to find out more about them along with the name Dr. Kato ; that is if you want to go the extra mile to check out whether surgery is still possible . I do not have opinion on Dr. Chalikonda.
    2. Gemzar+Xeloda+Avastin is a clinical protocol represented the two most commonly used first-line chemo agents currently used in treating CC along with a molecularly targeted therapy agent(MTTA) Avastin. Side effects are minimal(ie, you may or may not experience diarrhea/constipation,increase blood pressure,hand and foot syndrome and fatigue(usually on the 2nd or 3rd day when you have treatment with Avastin.)and Dr.Saab will give you a 10 pages info. about “Systemic therapy for advanced cholangiocarcinoma” when you sign up for that clinical trial.
    3. I think it is better than the standard Gemzar/Cisplatin for stage IV CC;the reason is that you will have an additional and relatively new drug in helping to fight this CC.Without the MTTA,the objective response rate is about20-40%;with the MTTA, the chance may be increased to about 40-60% in general.
    4.Check out Dr.Kato or Dr.Chapman and hospitals on this web site if you want to seek more opinions about surgical and hospital options.
    5. please read “Complementary and Alternative Medicine(CAM)” under this web site to find the current approach on this subject.
    I hope the info. helps you to make the correct decision.

    God bless.

    April 30, 2011 at 10:05 pm #50057
    gavin
    Moderator

    Hi Jeff,

    Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. Yes this news hitting you like a ton of bricks is something that I and others here can relate to. My dad was diagnosed back in 2008 with inoperable CC and I can stil remember what hearing that news felt like. He had PDT and a metal stent inserted as his treatment and he couldn’t have surgery or radiation at the time. And as things turned out, he wasn’t able to do chemo either at a later date due to the jaundice coming back.

    That is great to hear that your dad is in good spirits and is up for fighting this. A positive attitude will help him a lot here. We know what you are going through right now and how you are feeling, so please keep coming back here, post away, ask questions and if you feel the need to vent away then do so, we understand.

    I can’t help you really regarding the doctors or treatment facilities you mention as I am in Scotland, but I am sure that others will be along soon that may be able to help with your question. In the meantime here are some links that may be of use to you.

    Here is a list of major treatment facilities in the USA –

    http://www.cholangiocarcinoma.org/majorcancercenters.htm

    Getting as many opinions as you can for your dad is a great idea. And seeing as this cancer is so rare, get these opinions from doctors who have had lots of experience in dealing with patients with CC. The following is a list of treatment centres and doctors that was created here by our members, I am sure that it will be of use to you, most of it is US based –

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

    Did your dads doctors talk with you about any type of radiation treatment? And as far as chemo goes, did they talk about the gemcitibine/cisplatin combo? There is a good chemotherapy board here with many posts by the members here and maybe that will be of use to you –

    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16

    I hope that you will keep coming back and please keep us update on how your dad is doing.

    My best wishes to you and your dad,

    Gavin

    April 30, 2011 at 8:42 pm #5081
    jeffprenger
    Member

    Like everyone else in this situation, the news hit us like a ton of bricks. My Dad was recently diagnosed with stage IV intrahepatic CC on 4/18. There is nodular evidence that the cancer has spread to his lungs and possibly adrenal glands. His only symptom was a three-week upper, right stomach pain that ultimately landed him in a local ER and then on to OH State James Cancer Center for the diagnosis. He has no weight loss, jaundice, or any other symptoms. Dad is 69 yrs young and in fairly good health otherwise. The last two weeks has been tough, but Dad has a very strong faith in God and is in good spirits considering. My Dad, Mom, and family of course want to do whatever we can. I have two other sibs and we have been researching to learn as much as possible since the diagnosis. Since he is stage IV, we are told he is not a candidate for operation. Dr. Bloomston at OH State referred us to Dr. Bekaii-Saab at OH State and Dad has consulted with him about a clinical for treatment (Multicenter Phase II Study of Gemcitabine, Capecitabine, and Bevacizumab for Locally Advanced or Metastatic Adenocarcinoma of the Gall Bladder or Biliary Ducts). Meanwhile, we had a separate visit to Cleveland Clinic this week with Dr. Chalikonda and he confirmed Dr. Bloomston’s original impression. So, we have some tough decsions to make in the next week or so and we are just trying to get the most and best information possible to help Dad decide. A few questions if anyone has any advice:
    1. Any feedback on Dr. Bloomston, Dr. Saab, or Dr. Chalikonda?
    2. Any advice on clincial selection?
    3. Any feedback on the specific clinical mentioned above?
    4. Any advice on other Drs or Cancer Centers to seek out 4th and 5th opinions?
    5. Any advice on other treatment options aside from clinicals?
    That said, I want to sincerely thank all members of this website family. It is so nice to have found you all and your stories and information have already provided inspiration and insight. May God bless each of you and your loved ones and may we all keep up a good fight against this terrible disease.

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