Viewing 15 posts - 1 through 15 (of 23 total)
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  • #76726
    jz
    Member

    Pattimelt – my Dad’s surgeon at UCLA was Dr. Busuttil and his oncologist is Dr. Finn. Both are experienced with cc.

    If I may suggest, having dealt with insurance on getting approvals to see doctors etc, please do go see Dr. Chandler. If he’s not the right person because of his area of focus or expertise, ask him to refer you to the right surgeons and oncologists at the Pfleger Liver Institute at UCLA which is where the liver specialists reside. His referral could get you to the right place within UCLA faster than trying to argue with insurance.

    Best of luck.

    #76725
    lainy
    Participant

    Patti, Google his name , I DID. Funny I COULDN’T GET A GOOD READING ON IT.
    Maybe you can get a feel for him. Make sure he has dealt quite a bit with CC.

    #76724
    marions
    Moderator

    Pattymelt….while searching our previous threads, I was not able to locate a posting re: the above mentioned physician. Hoping for someone to come forward and share his/her thoughts with you.
    Hugs,
    Marion

    #76723
    pattimelt
    Participant

    Just got a call that I was denied the authorization to see Dr. Selby at USC. :( They are referring me to a Dr. Charles Chandler at UCLA. Has anyone seen him?

    #76722
    marions
    Moderator

    hisprazr……Chemotherapies used in the treatment for our cancer are not considered to be “curative”. These drugs have yet to be developed. Once maximum benefit has been reached, other options become available; the best of luck for a positive response to the upcoming radiation therapy.
    Hugs,
    Marion

    #76721
    marions
    Moderator

    Regina….our clinical trial feed is linked to the NCI:
    http://www.cholangiocarcinoma.org/clinicaltrials.htm
    Hugs,
    Marion

    #76720
    marions
    Moderator

    Exellen news, Patty. Good luck and know that we are behind you all the way.
    Hugs,
    Marion

    #76719
    lainy
    Participant

    Great news Patti. Go Patti Go! Go Patti Go!

    #76718
    pattimelt
    Participant

    Good news! We got the authorization to see Dr. Selby at USC. I have to get all y records to them now. That should be a huge task.

    #76717
    hisprazr
    Member

    My husbands oncologist at MD Anderson told us that it is not uncommon for this particular type of cancer to respond poorly to chemo. Then there are others like my husband that were rocking along great with no side effects at all and then wham! All of a sudden he it quit working. Shrinkage that had taken place was no longer the case. It was as big if not a little larger than in the beginning. But, when I asked about other chemo’s he didn’t feel there were any that would do as well as what the Gem/Cis had done since he was able to take it for a while with no issues. So, we have moved to proton therapy given after spacer has been put into place surgically to protect other organs. The good thing about being in these research hospitals is that the trials are available and something that wasn’t available when we began this journey is now, 5 months later, his best chance for success.

    #76716
    regina
    Member

    If you haven’t already, please check all the clinical trials websites. The NCI and the Armstrong Foundation, among others, have excellent matching services. I believe that in some cases, the research group will pay for the extra testing you need for the trials. Also, insurance companies usually benefit from covering patients for trial testing because they would not have to pay for the expensive medications they might otherwise have to.

    Good luck — there are many possibilities out there!
    ~Regina

    #76715
    pattimelt
    Participant

    We are waiting for authorization from my insurance for the USC referral.

    #76714
    marions
    Moderator

    Patty….Will the insurance pay for the referrral for surgical evaluation at USC? If so, then a referral for oncological evaluation may be possible as well.
    Hugs,
    Marion

    #76713
    pattimelt
    Participant

    Thanks everyone! For those who asked I 1st had 2 radioembolization treatments. No shrinkage from them. Then went to Gem/Cis which did not shrink it plus made my bloodcount go way down. Then tried Oxaliplatin/Xeloda. No shrinkage & horrible side effects with sores all over my legs. The next chemo would be Oxaliplatin/folfox. We will see how my blood is in a month before considering going back on another chemo. I feel very vulnerable of course being off chemo but am trying some alternatives in the meantime. Hopefully the referral to see the USC doctor will be authorized. The other dilemma we have is finances. We just simply don’t have money for out of pocket expenses. It would cost us 4 – 6 thousand to have more testing done for trials. Woe is me!

    #76712
    kris00j
    Participant

    I am also sorry to hear the news isn’t good. And I would like to echo everyone else as far as trying different chemos, radiation, etc. also, maybe since you ARE feeling good you could try a clinical trial? That’s what I did when all else failed.
    BTW, my surgeon couldn’t believe I wasn’t sick, either, at one point of my treatment.
    I hope someone comes up with something you can agree on. It is so frustrating! I know they try, but when it’s our lives I want them to try harder!!

Viewing 15 posts - 1 through 15 (of 23 total)
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