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renw's picture
renw
Posts: 282
Joined: Jan 2013

Finally got around to putting up a blog for anyone who may be interested. Still work in progress and lots more info will go up in the coming weeks.

http://www.mcrc4.com

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am so jealous, yours looks so good.

hugs,

pete

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Excellent blog...Thank you!

Judy

janie1
Posts: 753
Joined: Apr 2011

Very clearly written. I would be interested in hearing your experience with the clinical trial. You may have picked a bad one. Hopefully there are a few good ones currently.

renw's picture
renw
Posts: 282
Joined: Jan 2013

I'll put my experience with the clinical trial in the next few days. Most clinical trials I believe are detrimental to patients. The main reason is the researchers running the trials are primarily interested in PFS and/or OS and to get objective figures they will discourage you from other treatment options which may influence their results or may mean they have to cross you off the trial. Phase 1 studies can be dangerous, In phase 2 dosage trials u may not get the right dose etc. The main thing is to do a lot of research and weigh up the risks. Some trials are worth the risk most are not.

renw's picture
renw
Posts: 282
Joined: Jan 2013

FYI: the clinical trial post is up: http://www.mcrc4.com/?p=113

annalexandria's picture
annalexandria
Posts: 2231
Joined: Oct 2011

and well-writen.  Glad you're sharing your story this way.  AA

tanstaafl's picture
tanstaafl
Posts: 965
Joined: Oct 2010

Ren, you're doing a great job.   

Don't know if you've seen this yet links on self driven experimentation, from Ben Williams, PhD, a 17 yr GBM survivior  http://www.virtualtrials.com/williams.cfm

For techies wanting home cooking and perhaps some extra DIY chances

Keep up the good work, and just be careful.

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