Please, I need your input

I did a trial in Nashville at Sarah Cannon Research Center. I actually did that first. I was originally diagnosed as unknown primary with metastasized cancer. That was with 3 different biopsies. I asked my doc where he would go for a second opinion if it was him and he suggested them. Nashville had the results of my biopsies and they had a study that matched up to my tumor markers. At that point not having any idea..this was at least something that matched me. So I did that Phase 1 study that was nearing the end. All of the dosages had pretty much been figured out. It did cause my tumors to shrink for a period of time but gradually lost effectiveness and I quit study and went back to original oncologist. But I had also gotten the results of a genetic study on my biopsy and there was a 67% chance of CC. So I went on standard treatment Gem/Cis which also shrunk my tumors.
Like was mentioned before I think many people see studies as last ditch efforts. Also studies have rules and if you don’t live near study site it’s tough. So with CC which is rare where do people have to get to , to be in the study?

My personal viewpoint is so far they have not found a cure for this so current options at best prolong life for a short period of time (which is good!) but it’s the studies I will need to look to for long term survival.
Cathy

For me, I looked for trials to see if I was a candidate, however, since standard treatment was suggested to me (whipple, chemo) I never really considered a clinical trial.

I might have considered one if it had applied to me, however, no one even suggested it to me.

It strikes me that it is often the patients job to search out clinical trials and I imagine most people just don’t have the strength, time, or emotional reserves to do it.

Just some thoughts.
-Randi-

I can’t add anything better than Jason. Especially his point #3 above. That is exactly how I felt about clinical trials – you go to them after all other traditional options were exhausted. And again, as Jason mentioned, clinical trials were never mentioned to me. I’ve brought them up recently but now that I’ve had chemo, traditional radiation and SBRT, I find I’m not eligible for a lot of clinical trials.

Mary

I can tell you why my husband didn’t enter a clinical trial. When he was first diagnosed, we were both so freaked out about the prognosis that we wanted to get started with chemo right away to start fighting the cancer. When that drug regimine stopped working, we found that he didn’t qualify for some clinical trials having already had treatment of some sort. I also found the process of looking for one very complicated, trying to judge whether he fit the inclusion criteria which was in some cases pretty extensive. Bottom line, I think you need a doctor who encourages participation and would be willing to help you find one whose criteria you matched. We didn’t have that.