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CourtneyL · 10-28-2011, 03:46 PM

Hi All - Those of you who follow my Caringbridge page already know this but I wanted to let everyone know in case anyone else is trying the Chloroquine experiment.

I started on a daily dose of Chloroquine about 3 weeks ago after doing some reading about its anti-cancer stem cell properties and seeing that it is being tested in the clinical trial setting in combination with chemo.

A week ago I had a seizure out of the blue and my onc thinks it was caused by the Chloroquine. Seizures are listed as one of the negative side effects of the drug. My subsequent brain MRI and CT showed that all of my existing brain mets are healing and/or are gone so we don't think the seizure was caused by the brain tumors themselves. The Chloroquine is the most likely explanation so we are going with that theory.

I am currently taking steroids and anti-seizure meds but will be coming off of them by Monday (thank goodness!). Fortunately I didn't suffer too many side effects from the seizure other than a sore lip (from biting down on it during the seizure) and sore muscles (from contracting during the seizure). I am on the road to recovery and feeling better each day.

Just wanted to give y'all a heads up in case anyone else decided to try the Chloroquine experiment.

10-28-2011, 03:46 PM	#1
CourtneyL Senior Member Join Date: Aug 2008 Location: San Francisco Posts: 260	Chloroquine Warning!!! Hi All - Those of you who follow my Caringbridge page already know this but I wanted to let everyone know in case anyone else is trying the Chloroquine experiment. I started on a daily dose of Chloroquine about 3 weeks ago after doing some reading about its anti-cancer stem cell properties and seeing that it is being tested in the clinical trial setting in combination with chemo. A week ago I had a seizure out of the blue and my onc thinks it was caused by the Chloroquine. Seizures are listed as one of the negative side effects of the drug. My subsequent brain MRI and CT showed that all of my existing brain mets are healing and/or are gone so we don't think the seizure was caused by the brain tumors themselves. The Chloroquine is the most likely explanation so we are going with that theory. I am currently taking steroids and anti-seizure meds but will be coming off of them by Monday (thank goodness!). Fortunately I didn't suffer too many side effects from the seizure other than a sore lip (from biting down on it during the seizure) and sore muscles (from contracting during the seizure). I am on the road to recovery and feeling better each day. Just wanted to give y'all a heads up in case anyone else decided to try the Chloroquine experiment. __________________ 4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++ April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response! Sept 08-Dec 08: Herceptin +Zometa for maintenance. Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait. April 09: Gamma Knife 10 brain mets, add Xeloda. Sept 09: Gamma Knife to 1 brain met. Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa. May 10- Sept 10: HER2 Vaccine Trial Sept 10: Add Tykerb for more brain mets. Oct 10: Gamma Knife to 7 brain mets. Dec 10: Switch from Zometa to Denosumab. Jan 11: Gamma Knife to 3 brain mets. March 11: Gemzar/Herceptin for lung/bone progression. April 11: More brain mets - Intrathecal Herceptin June 11: Ixempra/Herceptin for lung, soft tissue progression. Aug 11: Gamma Knife Sep 11: Abraxane/Herceptin Future: NED Send me a PM if you'd like to follow my journey on Caringbridge.