Tuesday, May 12, 2015

A quick update from MIRT/UAMS

I received a letter today co-authored by Drs. Morgan and Barlogie that affirmed Bart is going to continue practicing elsewhere.  This is notable only insofar as it reframes the previous communique from Arkansas.

As I said, there are politics involved here that I want no part of.  All the complexities of my upcoming decision remain relevant.  More to come as events merit!

5 comments:

  1. I have been reading your blog for over a year now and It seems we are in very similar situations with regard to date of diagnosis, TT4 light arm treatment, fears etc. However, I was diagnosed as low risk, I believe you were standard risk. The dreaded happened, during my follow-up in Dec. 2014 Bart informed me that I was in early relapse. Trying to read between the political lines has been daunting. Following your blog I've realized we have many paralleled concerns about decisions to be made e.g. where and how to continue treatment, insurance coverage, what happens to my stem cells collected, most likely higher travel expenses if change care location etc. Thanks for your entries Nick. All the best.

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    1. Fllounder -

      I'm sorry to hear of your early relapse.

      I recently heard from another patient in a similar situation. I was hoping you might be able to tell me some particulars, so that I can piece together enough information to make a substantive post on the topic of the importance of ongoing testing (especially imaging), the problems with even the most sensitive BMB tests, etc.

      With that in mind, I hope you won't mind if I ask you a couple of questions?

      It would really be helpful to know when you started treatment, at what point in the treatment you reached complete remission, how long that remission lasted, did you test negative for MRD and if so how many times, did you have any unresolved lesions or had they all resolved, and what is Bart using to treat your relapse?

      Again, very sorry to hear of the relapse -- I hope Bart & co. are able to get it under control!

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  2. I always thought that low risk and standard risk were the same risk category. Could someone please clarify the risk categories? Thanks.

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  3. Sorry John, I didn't intend to cause confusion. I believe the terms low risk and standard risk are used interchangeably. ๐Ÿ˜Š

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