Discussion Board Forums General Discussion looking for advice 2nd opinion

Viewing 15 posts - 16 through 30 (of 39 total)
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  • #56904
    lainy
    Participant

    LeeAnne. I had posted this earlier today under your other post about Dr. Javle. Sorry, I thought you saw it, but it is different then the one you tried.
    mjavle@mdanderson.org.

    #56903
    leeann
    Participant

    I’ve tried to send email but keep bouncing back???

    #56902
    sallypa
    Member

    thank you all for the support. leeann, dr javle email is drjavle@mdanderson.org
    he is very interesting. we actually emailed him last night at 11:30 pa time and he responded almost immediately. in my sisters cases he told us to start chemo as soon as possible. i hope everthing works out for you.

    #56901
    leeann
    Participant

    Hi Sally,
    Sorry to hear about your sister. Hope chemo works for her.
    I had resection last november with clean margin and no lymph nodes involvement. My surgeon and 3 out of 4 oncologist recomm no chemoradiation.
    After what chemo and radiation did to my Dad before he passed away I was glad to hear I had an option to op out.
    But after reading many many post from other cc patients and I’m second guessing my decision not going through it.
    So I thought maybe I can email dr. Javle for his opinion. Would you share his email address? I called the hospital but wouldn’t give and saying I need to make an consult appt.
    Hope to hear from you….And wishing you and your sister best of luck.
    LeeAnn

    #56900
    kris00j
    Participant

    Sally:
    Sending good thoughts and prayers that the chemo works for your sister.

    Kris

    #56899
    jathy1125
    Participant

    Sally-I am sorry about all your frustration. I have nothing but positive to say about Barnes-Jewish Hospital in St. Louis MO. When ever anyone has contacted them the one thing they say is how they are amazed how Dr. Chapman took there phone call!! I am right now dealing with a questionable scan, and when they set up an appointment 3 weeks away, I whined about “to much time to really panic and google” and they said your right and got me in this week.
    Dr. Chapman has not changed the diagnosis of many patients who consulted him, but there has been 2 on our site who has.
    Dr. William Chapman’s number is 314-362-5376. He is one of the top doctor for CC and by far one of the kindest.
    I am alive because of God, 2 strangers, and Dr. Chapman and that is how he would list it. He is so humble.
    Lots of prayers for your sister and all of you-Cathy

    #56898
    lainy
    Participant

    Sally, while I can’t help on the Chemo, just want to wish your Sister the very best I can give for her Cocktail today!!!

    #56897
    sallypa
    Member

    my sister is going to oncologist tomorrow. he wants to start xeloda-oxiliplatin tomorrow. i am not too confident in this treatment. we are taking the one study i found that showed this regimin was not so effective for intrahepatic cc. i hope he has a good answer why he still wants to go with this regimin. the other advice we got was for gemzar-cisplatin but either way we were told we need to start as soon as possible. we are praying this will work.

    #56896
    jim-wilde
    Member

    sallypa, I would suggest calling Dr. Abby Siegel at NY Presbyterian. She’s an onc in the same dept. as Dr. Kato, my surgeon almost three years ago. Dr. Siegel can advise which course of action might be best, and it’s normally not too hard to get an appointment, but I’m sure you will need to get records and scans to her. Her phone number is 212,305.9783. You will get her scheduler, Anitissa Alessandri. Anitisssa happens to be friends with Delia Garcia, Dr Kato’s secretary. Just so you have it, Dr. Kato’s number is 212.305.9783, his secretary is Delia, and his PA is Monica.

    My experience with NY Presbyterian was great, and I highly recommend both Drs Siegel and Kato. I continue to see Dr Siegel for regular onc followups.

    BTW, even though chemo has begun, there’s no compelling reason to not get a second opinion, unless you are totally satisfied with the plan currently in place.

    #56895
    tflory
    Member

    Sallypa, Like it isn’t enough to just try to help you love one deal with the cancer alone, but there is all this other crap that you have to deal with too. When we switched doctor and hospital during chemo treatment. It took me a month of phone calls to OSU to finally get records and radiology reports sent to our doctor. The stupid excuses I kept getting from them was ridiculous. They make it so much work to switch, but I am so glad we did!

    #56894
    lainy
    Participant

    OMGOSH, Sally, I am elated that you got such a quick response from Dr. Javle. Wow is all I can say for now!

    #56893
    sallypa
    Member

    i emailed dr javle and he responded almost immediately. he said my sister should start chemo immediately. he said gemzar cisplatin is the standard but xeloda is acceptable. i want to ask him for a little further explanation of acceptable. i did add a new topic to get some opinions on xeloda oxiliplatin vs gemzar cisplatin. my thanks to lainy and derin for the help reaching dr javle.

    #56892
    sallypa
    Member

    hi kris,
    thank you very much for the information. i will look into it. the treatment they are suggesting now is xeloda and oxiliplatin.

    #56891
    kris00j
    Participant

    Sally:
    I posted on another topic but wanted to repost here in hopes you’ll read it. Have you thought of Cooper Medical Center? They’ve been advertising they now treat bile duct cancer. Or NY Presbyterian in NYC? Jim Wilde on this forum went to Dr. Kato (surgeon) there and might have some info about possible oncologists there.
    From reading other posts from you: was your sister’s tumor too close to the vena cava? That’s my problem. It’s wrapped around the v.c. and my surgeon now says he’s pretty sure he can get most if not all of the tumor out while resecting 2/3 of my liver. He says he will cauterize or electrocute the area around the v.c. to hopefully kill it all. (he believes if he’s too sure of himself, God will laugh at him)
    I had Gem/Ox, and it did a great job on my tumor. Hopefully it will do just as good a job on your sister’s cc. I hope so… cc seems to be unique in that 2 people can get the exact same cocktail and have totally different outcomes.
    The main side effect is the sensitivity to cold. Make sure you bring gloves and a scarf, and that her feet are warm. The oxaliplatin makes it tough to pick up cold objects and drink cold drinks. I even had to put gloves on to take eggs out of the fridge. I’d let them warm up for about 20 minutes so I could break them and cook breakfast.
    Good luck with your second opinion search. I hope someone helps you soon!
    Kris

    #56890
    lainy
    Participant

    Sally, it was “HamptonSarasota” who sent him the e mail and try looking under the Main Directory under Hospitals. It’s Dr. Javle. E not an I, sorry.

Viewing 15 posts - 16 through 30 (of 39 total)
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