HER2 Support Group Forums - View Single Post

Carolyns · 04-14-2010, 07:10 AM

What a load of crap. As a heavily pretreated Stage IV Cancer Warrior I am more limited to Phase I studies... if I can find one. I have participated in 3 clinical trials and got the placebo once (cancer progressed). I am a lab rat and do what I must to live. If I am drowning in a river do you think it matters if you perform more tests on the life saving ropes while I sink below the surface of the water? Yeah, we found this rope better than no rope at all... where the heck did she go?... whoops I guess we lost her.

TDM1 just gave me 7 more months... Tykerb at least 6 months... the science is moving fast data travels slow. No one in my situation would slow the science to wait for the data.

If I was standing out on a ledge TV cameras filming no one would let me die. Everything would be done without regard to risk or cost.

Healthy folks with options don't want to enter trials. Stage IV patients (many of us) are getting more limited and NEED trials to keep going. Groups like this seem to want to prevent us from getting access. Expanded access is a joke so we can't go there. Trials that are further along don't want us because we are too heavily treated. We walk a tight rope that is difficult for anyone else to imagine.... until it is them or their loved one.

Give me a break.

04-14-2010, 07:10 AM	#15
Carolyns Senior Member Join Date: Jun 2006 Location: South Florida Posts: 477	Re: BCA fighting to keep tdm1 off market What a load of crap. As a heavily pretreated Stage IV Cancer Warrior I am more limited to Phase I studies... if I can find one. I have participated in 3 clinical trials and got the placebo once (cancer progressed). I am a lab rat and do what I must to live. If I am drowning in a river do you think it matters if you perform more tests on the life saving ropes while I sink below the surface of the water? Yeah, we found this rope better than no rope at all... where the heck did she go?... whoops I guess we lost her. TDM1 just gave me 7 more months... Tykerb at least 6 months... the science is moving fast data travels slow. No one in my situation would slow the science to wait for the data. If I was standing out on a ledge TV cameras filming no one would let me die. Everything would be done without regard to risk or cost. Healthy folks with options don't want to enter trials. Stage IV patients (many of us) are getting more limited and NEED trials to keep going. Groups like this seem to want to prevent us from getting access. Expanded access is a joke so we can't go there. Trials that are further along don't want us because we are too heavily treated. We walk a tight rope that is difficult for anyone else to imagine.... until it is them or their loved one. Give me a break.