pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?
Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.