Herceptin and Perjeta Causing Restlessness

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purkinje
purkinje Member Posts: 1

I'm Her2+, ER-, PR-, and on every 3-week Herceptin and Perjeta infusions.  Stage 4, NED since Oct 28, 2015.  Unfortunately, with previous Essential Tremor and Restless Legs, the Herceptin-Perjeta is causing chronic and increasing restlessness ("Akatesia"), funny movements with arms and legs, looks like palsy ("Dystonia"), and head ratcheting to the one side ("Torticollis").  It is getting worse.  I've been to two top neurologists in the country - one wouldn't treat me (Muhammad Ali Clinic in Phoenix!), and the other thinks I'm crazy.  It happens EVERY night.  Only narcotics (Oxycodone or Demoral) stop it.

I'm a neuroscientist and KNOW that these two drugs are aggravating my underlying conditions of Essential Tremor and Restless Legs.  I am NOT crazy!  I've only seen one research paper from a case in Italy on this.

Does anybody else experience this?

Thanks for any help!