Talk about a Roller Coaster at Dana Farber Today!

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11/14/2017 3:41pm
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Replies: 1

What a morning it was for us.  Our Oncologist in Syracuse set up the appointment for us to meet with Stephen Hodi (the 2nd time) to see about future treatments and recommendations.  You all know the anxiety about such an important meeting, in addition to taking two days off of work to drive the 5 hours there and back the next day.  When we arrived, Dr. Hodi greeted us nicely but he was never sent a thing from our Oncologist.  No records, zero which included the recent MRI this past week.  He could not advise us whatsoever.  Talk about us being very upset.  We clearly had Stephen Hodi listed at our home office to be sent information.  In the end we did get the MRI report, thanks to a very efficient administrative assistant, and he was able to tell us the spot on the liver is nothing to worry about and he is present NED (he is stage 3B).  He was truly a doll spending such an amount of time with us when he really didn't have the data he needed.  Believe me we had some calls today to our doctor's office.  This can never happen again.   We just drove home from Boston, it is 3:40 in the afternoon, and already I am in pj's in bed.  The roller coaster just did us in.  What should of been a very positive meeting, turned into a stressful morning.  Stuff like this should not happen.


But, in the end NED for another 3 months.... relax and enjoy those words, right?


Anonymous - (11/14/2017 - 3:48pm)

Note for future:  get copies of EVERYTHING and keep in a book.  Then it doesn't matter if things aren't sent, you have your own copies.