[suzierose]

Re: They just dont know what to do with me...

by suzierose on Sun Apr 22, 2012 2:09 pm

Hi Amber,

Your local doctor should confer with Mayo in Rochester about multiple myeloma not the UofMN...they really do not have the same level of expertise on multiple myeloma at the UofMN...huge difference between them and Mayo from testing to therapy. Non multiple myeloma experts have a difficult time weighing all the options you have even with their medical knowledge if they do not primarily treat multiple myeloma patients. The answers are not straightforward and rely moreso on years of clinical expertise.

Try not to play the waiting game. My numbers jumped in one month between diagnosis in Sept and treatment starting the end of Oct.

ETA: They are now doing trials where the entire therapy is ORAL, Millenium's new protesome inhibitor(PI) is oral and it is available in clinical trials with lenalidomide and dexamethasome, at Mayo and TN.(SarahCannonInstitute)
http://myeloma.org/ArticlePage.action?articleId=3547
http://www.ahdbonline.com/article/next-generation-proteasome-inhibitors-cause-less-peripheral-neuropathy

I am very interested in seeing follow up from these trials, as they are totally oral.
While oral MLN9708 has less PN than Velcade (both made by Millenium) I think it may not produce duration of response as long, since it is reversible like bortizomib vs. carfilzomib. Onyx also has an oral PI in clinical trials.

However, the option of totally oral therapy is a significant advantage, particularly with less PN over bortezomib.

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