Chloroquine Warning!!!

[CourtneyL]

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.

[Jackie07]

Great news! Thanks for sharing.

[Paty]

Courtney,

Thank you for letting us know. Hope you are feeling better now.

[radiant]

Courtney:

WOW - the brain met are GONE. What incredible news. Holy smokes. I've been wondering how you've been doing. Thanks for the update on the Chloroquine. I wonder if it did help though?
Hugs,
Kim

[CourtneyL]

Thanks everyone. Yes, Kim, Gamma Knife has always worked like magic for me - thank God. The MRI said that the overall size and number of lesions was reduced. I'm feeling super grateful and hopeful (always). Let's finally meet one of these days - you live too close for us to not have connected yet!!

[chrisy]

Hmm. Scary - just another reminder that you have to be really careful"!

But delighted to see that you are doing so well that it was "something else" causing the seizures!

[Ceesun]

Count me in on the list of those who are pleased you are doing well...and thanks for the info. Stay well. Ceesun

[SoCalGal]

Thanks for the info - glad you are on the mend and will come off the meds, soon. Sending hugs!

[Rich66]

Wow.. glad you're ok.
What dose were you on and how did you arrive at the dose?

[Delaney]

Courtney, congratulations!! You're on the way to being Ned in the head!!!!!!!!!!!!!!!!!

[Ellie F]

Hi Courtney
I am so glad you are OK but sorry you had this bad experience!
Please take care and let us know how you go.
Your friend
Ellie

[Rich66]

Glad to see Courtney's doing better. Since she's had multiple gamma treatments, just adding this possibility into the equation:

http://www.pennmedicine.org/neuro/gammaknife/ask/avm.html

Mark asks:
I had Gamma Knife in Dec. '04 for AVM (http://www.pennmedicine.org/encyclopedia/em_DisplayArticle.aspx?gcid=000779&ptid=1) in the left occipital lobe. In May of '05, I had a Grand-Mal Seizure (http://www.pennmedicine.org/encyclopedia/em_DisplayArticle.aspx?gcid=000695&ptid=1). .... We were not told about the possilbe seizures after the Gamma K


Dr. Lee responds:
Seizures are a side effect of any procedure in the brain, including Gamma Knife Radiosurgery. In addition, Arteriovenous Malformations in your brain make you more susceptible to seizures.