random thoughts on the conference

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  • #98100
    vtkb
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    For some reason I cant go to sleep so I started browsing the discussion boards again, and wanted to post my thanks for the foundation for hosting the conference.  It was great finally meet some of you and to put some faces to names both from here and the fb group.  I’d like to thank the medical and industry community for giving us the opportunity to participate in their sessions.  I think its equally important that patients were able to engage with the researchers and oncologists to show the patient’s thoughts as well.  Melinda’s presentation on the final day I think summed up a lot from the patient’s perspective.

    I will try to update on here a little more from Kathy’s course as it happens.  I think during our cancer free year it was easy to forget to post any updates, and I wonder how many stories we dont hear about after the initial diagnosis.  I think also maybe to make it easier for people reading the posts we should end each post with a quick timeline of the pts course (Ill use an example below) so that if someone is reading an update they dont have to click/scroll through multiple pages- can this be added as an automatic footnote somehow? If not it may not be worth it to have to keep typing the same thing over and over again.

    Finally- thank you to all the other caregivers/patients who attended and showed Kathy and I some support.  And to the newly diagnosed patients- get 2-3 copies of all your scans, seek out second opinions (especially surgical if it hasnt spread- you can message me for NYC recommendations), get your tumor and blood genetically tested, and join either this community or facebook or both.  There is support out there.

    Thanks again,

    Billy

    ps- was there any milk to go with the coffee at breakfast or was only half and half provided?

     

    example of footnotes if possible (borrowed from a different cancer groups discussion boards):

    pt age (update it as you get older): 38

    year diagnosed-type: 2016-IntrahepaticCC, 12/2018-mets to skull, lung, spine, left supraclavicular lymph node

    treatments in order: gem/cis, resection, gemox, radiation with xeloda (meningitis) 2016-2017.  2019- radiation to skull, gemox

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