Hello everyone, South Cali and Arizona!

Discussion Board Forums Introductions! Hello everyone, South Cali and Arizona!

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  • #93188
    red
    Spectator

    Hi Julie, You struck such a sweet note in your postings because you care so deeply for your Dad and are searching so diligently for his proper care. By now you may have already decided to move somewhere and may also have found an Oncologist that you are happy with. However, if you have not done those two things, I just want to put in my two cents about my experience with my hubby’s situation. He is currently being treated at Banner MDA and we both are so very pleased with his care there. His Oncologist is Dr. Kundranda and he is just wonderful insofar as he actually has a grant to do research on bilary cancer, particularly cc. Not only is he tops in his profession but also he is extremely patient and informative. He listens!!! It is so important, also, for a man to be able to relate to a physician and often times that isn’t the case. However, Dr. Kundranka is such an understanding person to talk to and always, and I mean always, answers every question asked, whether it be by hubby or by me. Banner MDA is an incredible facility and I think you would be most impressed if you could just take a tour. Their Oncology Department treats each chemo patient so wonderfully and with such tenderness, too. Each patient has a very private cubicle, an assigned nurse and even lunch is catered!

    #93195
    middlesister1
    Moderator

    Julie-

    We may have forgotten to point you to the easiest starting point- the tab for newly diagnosed.

    http://cholangiocarcinoma.org/newly-dx/

    It has a link to the major cancer centers. And, once I found something I was interested in, I would come back to the discussion board and use the search function.

    Good luck,
    Catherine

    #93194
    julie16
    Member

    Thank you everyone for your response and advice.
    We are moving! definitely! just need to do my homework here in the forums, and decide where to.

    I also thought about USC, but I went to UCLA first which honestly was a bad experience for us..

    Beatriz, I feel so relieved now to know I am not wrong about the fact that we do not have a big center in town and we need to travel in order to find one… And thanks for your advice…

    I now know that I am in the right place to start my research…

    #93193
    middlesister1
    Moderator

    Dear Julie,

    Welcome to our group. I agree with getting Dad to see a center which is familiar with CC. Gem/Cis is the most common first-line treatment for inoperable CC (My Mom did Gem/Cis and then Y-90), but it is good for you to get the opinions now so you can have a plan. In just the past few years, there have been many other options added on how to treat, but not all hospitals will be using them.

    Best wishes,
    Catherine

    #93192
    lainy
    Spectator

    Julie, go to our INDEX on the Home page and there are all kinds of posts under HOSPITALS.

    #93191
    julie16
    Member

    Thank you for your response.
    Well, perhaps i should have explain better our situation

    We live in El Centro, CA… here there is no big facilities nor a lot of ONCs and we are usually sent to San Diego CA (less than 2 hrs from here..) for more specialized tratments. But when I was trying to see my options I didn’t find muchinfo on CC from UCSD Moores, Sharp or Scripps, which are the main hospitals in San Diego.

    ctca, Mayo AZ, MDA AZ, are less than 4 hrs from where we live.

    In other words, we have no option but to travel in order to find a descent center/ONC….

    So that’s our sad situation…

    #93190
    lainy
    Spectator

    Dear Julie, welcome to our remarkable family but sorry you had to find us.
    I am also in Phoenix, actually live in Gilbert. I am usually not quite as frank as I am going to be on a welcome note. but I cannot think of anyone on our Board who has been treated at CTCA as they are a good Cancer Center but they do not do much with CC. CC is so rare but strides are being made. You want to be with an Oncologist who has treated quite a few CC patients. One that is open to new treatments and especially trials. If you can tell me what part of this vast city you are in I can try and steer you to a couple of ONCs. I went to Banner MDA here for myself and also had a talk with the ONC about CC and they have not treated that much in CC here. MDA in Houston is the tops. This MDA is actually a Banner Hospital, which is good bit not where I would be for CC. I will only go to Banner for myself or if a GREAT ONC sent me there. Mu husband had the BEST ONC but he has retired yet everything he did was at Banner Desert. Guess what I am trying to say is I would get my new ONC immediately as that would be the best starting point. Then you build a team from there. I have to say we do not want to go to a Doctor who gives up before anything is tried. We have many patients who were deemed inoperable and went on to have successful surgeries. Again if you tell me what area you are in perhaps I can help more.

    #93189
    darla
    Spectator

    Dear Julie,

    So glad you have found us, but sorry you had to. This is just my opinion but if it were my dad I would definitely choose Mayo or MD Anderson over CTCA. Hoping others who have had more experience with these institutions will chime in shortly. Wishing both you and you dad the best on this journey you never expected or wanted to travel.

    Hugs,
    Darla

    #12762
    julie16
    Member

    Hello, My name is Julie, my dad was diagnosed with the cholangio about 2 months ago.

    Fist of all, I have been reading a lot of the post here and thanks to most of your Q/A, I have been learning a lot about this…type of cancer… This site is very helpful.

    Well, IHC 16 cm tumor in right lobe of liver, invading right adrenal gland (metastatic to adrenal gland suspected), stage IVB. he is receiving a combo of gemcitabin/cisplatin, this would be his 3 time receiving it but had been told that 2 chemos= 1 cycle. so he is starting 2 cycle.

    We are with CTCA Phoenix AZ, right now, and have visited UCLA (Dr. Richard Finn) for a 2nd opinion (or 3 rd since our fisrt opinion was from a well known Dr. in Mexico city due to a long story related to my dads insurance, and this Mexico city dr referred us to CTCA Phoenix, AZ) .

    Well, dr, Finn in UCLA told us he agrees with all 2 other drs.,
    **** Irremovable tumor with no hope of shrinking due to size*****

    =( (he was rude and cold by the way). So we decided to stay with CTCA in AZ since my dad really feels confortable with the facility and work team.,

    Today we were in shock bc his current dr. (Vivek Kemkha) is leaving CTCA it is very strange bc he leaves with all of his team.. didn’t mention the reason but it is odd.

    The dr made my dad feel safe, and now daddy is kind of concerned… and I am in a point of…ypu know.. just trying to decide if this is the right moment to move my dad to a bigger hospital… like Mayo Clinic or MD Anderson in AZ.

    My dad condition is well, he has recurring ascites, but have been good besides that. Blood work is ok, most of it normal, even bilirubin. just keeps being low on rbc, hemoglobin and albumin. And I don’t want to sound negative but I don’t want to wait until we are in need to move to a bigger hospital looking for another opinion or help.
    I learned from this site that cholangio is better to be treated in a big Cancer Center… and I just don’t know if this would be the right moment to move fw…

    Any ways, my questios are:

    Any experience with any of these 2 facilities?? Mayo or MD Anderson in ARIZONA?

    and another question..

    Anyone with a similar case that can give me an advice or just words that can help me understand a little bit more about all of this..

    Thank you very much.

Viewing 9 posts - 1 through 9 (of 9 total)
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