Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel
 

The best trial in my opinion is at Sloan in NY, Farber in Boston, where t dm-1 is given in low doses , w/ taxol unfortunately at first. If you respond , they drop taxol. And 50/50 chance of getting pertuzumab too. We have seen quick responses in folks who highly overexpresss her2 ( FISH scale over 3.0 ), whether they get pert and taxol w t dm-1 , or no pert , just taxol/t dm-1 together . t dm-1 is the main factor, and in this trial everyone gets it !
The other trial that I know something about is Theresa, you have to have progressed on at least 2 previous her2 targeted therapies, herceptin, tykerb would count . In theresa 2 out of 3 get t dm-1, but the third gets " physicians best choice ". So, thats a gamble that you might not want to take if your cancer is rapidly progressing. Lorraines was, and she got into access before they closed it.
Have you had a taxane ? , like taxol ?or taxotere, abraxane ? Some docs might want you to try those first. Bad s/e, but effective , and t dm-1 should be out w/in a yr , or less.
Another option is compassionate use. Esp if youve progressed on a taxane and tykerb, definitely. Gen. top execs have been very rigid about it , denying it 100 %, but now that the main trial " Emilia " , that This FDA forced them to finish before approval would even be considered, is done, Gen. may ease up . Nothing to lose, be ready to go public if they give you the runaround.
Most docs are skittish about comp. use , so most go at it half -heartedly, dealing w/ Big Pharma isnt something they relish. So, you have to push docs . This FDA will stand on the sideline, let you bargain w the co., then ok it , if co. does. What a racket our govt is ! Start w/ calling Genentech, 888-662-6728, ask about trials , good luck !

Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel
 

There is a new round of EAP sites opening beginning now at the end of August. Check the Sticky above for the lastest updates.

Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel
 

Hello all,

I live in Indianapolis, Indiana which is about 45 minutes south of Lafayette, Indiana (home to Purdue University). If you have any questions please let me know. I am sure the study will provide housing and such but I thought that if you needed any information about the area or just a chat, please let me know. Lafayette is in the middle of no where as far as the state goes but it is a nice little city. Low crime with the exception of the university students engaging in a little underage drinking. If you fly into the Indy airport you will notice that the whole process is rather easy and not very stressful at all, certainly in comparison to something like O'Hare.

Please let me know if any of you are going to participate in the study.

Take care,

Jackie

Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel
 

I travel Texas to Denver every 3 wks for compassioate use, and the so far the study has not provided housing (a yr and a half). So, I fly in and out the same day.