Need Help Formulating Questions for Second Opnion

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blainejennifer
blainejennifer Member Posts: 1,848
edited July 2017 in Stage IV/Metastatic Breast Cancer ONLY

I am happy with my local oncologist, but at his suggestion, I am heading off to NYC tomorrow to get a second opinion from Dr. Linda Vadhat at Weill-Cornell.

I have gone through Taxol, Faslodex, Tamoxifen (fail), Xeloda, Letrozole/Ibrance (fail), Halven, and CMF. I am now on my first round of Doxil. I've had one batch of radiation for a wonky hip four years ago.

I was originally bone mets only, but progressed to some small lesions on my liver about 2 years ago after Letrozole/Ibrance failed. I now have one small liver lesion.

I am ER/PR+, HER2 -, but Faslodex is the only anti-hormonal that I seemed to get any benefit from.

I am interested in trials.

Can you guys help me think of what I should be asking Dr. Vadhat? I plan on asking her about my standard of care so far, even though I think my local Onc saved my life by insisting I do weekly Taxol. I will also ask her if it is time to get a new biopsy now that I have a soft tissue lesion.

It'll be 5 hours on a bus, snazzy new Doctor appointment, then 5 hours back. Blurg.

Thank you for your help. Chemo brain + opiates = white noise in my brain when I try to think of what to do here.

Jennifer

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2017

    If you are AR+ you may be interested in a related trial.

    Perhaps you might want to quickly visit the mbc trials tool below, note the numbers of the trials you are interested in, and discuss them tomorrow.

    Best wishes for a good visit!

    https://www.breastcancertrials.org/BCTIncludes/AvonPfizer/BCTDemo.html

    Note: There are several issues with this mbc clinical trial search tool that may prevent a full list of applicable trials from being displayed.To bypass these issues so that a complete list of relevant trials will be displayed, please follow the directions below.

    After launching the tool, please enter information only in the following sections and nowhere else.

    •Year of Birth

    •Female or Male

    •Pre-menopausal or Post-menopausal (presented if "Female" was selected above)

    •Breast cancer type

    The results can be filtered by type of therapy, such as hormonal therapy, vaccines and immunotherapy, etc.

    Once the list of clinical trials is displayed, patients can refine the list by selecting the specific type of trials they are interested in (such as Chemotherapy, Hormone Therapy, Targeted therapy, Vaccines and Immunotherapy, etc.) by clicking on the desired category next to the "Jump to" prompt near the top of the page.


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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2017

    Thanks, Best Bird! Off to the Doc today, so I took down the post.

    Jennifer

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2017

    Let us know what transpired, please!

    Tina

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2017

    Tina - nothing transpired. Here's the story:

    I got on the bus at 8:30 and got into NYC at 1:00. I had barely enough time to get crosstown to the Doc's, but made it there at 1:45 for an appointment at 2:00.

    At 3:00, they hadn't even called my name. I get worried, as I have to get back to bus to go home by 5:00, and I'm 40 minutes away (X-town is always wacky). At 3:30, the doctor's nurse comes out and tell me that I can't be seen today due to an emergency. I get it - stuff like that really happens. She promises that the Doc will review my file and call me tomorrow (today) between 4 and 5. So, I get back on the bus for 4.5 hours and get home. Next time, I'll get an earlier appointment/bus, and get the last bus out at 7:00PM.

    No call today, and it is 5:40PM. I don't really know what to do about this. I had chemo today, and mentioned it to my nurse, and she didn't seem pleased with the situation on my behalf.

    I'll start shaking trees tomorrow, and set my spouse to shaking trees on the NYC end, as he's the one who knows those people.

    I know I should be angrier, but the bus ride was very pleasant, and the support staff at fancy doc's place were nice also. I did get to have hideously over-priced spaghetti near Bryant Park, and sat next to either a tired, sleeping tourist, or a clean transient. People stopped to take pictures of him!!!!

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  • Kandy
    Kandy Member Posts: 1,461
    edited July 2017

    Well, that is just horrible. You are definitely taking that better than I would have. I would be fuming so bad, I would blow my top off. Blessings to you. I hope she does call and tell you something.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2017

    Kandy,

    I was so full of Ativan to survive the bus ride because of back pain and muscle spasms, that my bitch dial was turned all the way down.

    Plus, it was a beautiful drive, and the bus was pretty empty both ways. I sat and read, looking out the window, without interruption. Not so bad, right?

    But, should I not get a straight answer tomorrow from that practice, the bitchometer might head into the red.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2017

    Aarghgghghh! What a disappointment. Good thing you were drugged.

    I hope you are now peacefully sleeping off the Ativan.

    Keep us posted.

    Tina


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  • Sue2009
    Sue2009 Member Posts: 228
    edited July 2017

    wow Jennifer, you are heading for sainthood. I hope you got answers. Su

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2017

    Not yet!

    So, probably going to get a different second opinion, and am working on a strongly worded letter.

    Not angry though - it really was a lovely bus trip. :)

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