May 22, 2013 at 3:18 am #72355cathy1024Participant
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.
CathyMay 22, 2013 at 2:42 am #72354sw55Member
My oncologist at MDA did mention clinical trials at my first appointment, but it was presented as something we might try if standard treatment did not work. I would consider a clinical trial.May 20, 2013 at 12:31 am #72348RandiParticipant
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-May 19, 2013 at 11:34 pm #72350lainyParticipant
Well, this is WAY after the fact, but at our first visit with our ONC after Teddy’s Whipple he told us that he had no problem looking at trials. Since T had clear margins and everything looked good and we were so overwhelmed it all happened so fast. Trials was just something we put on the back shelf. It appears some ONCS mention it more don’t.May 19, 2013 at 11:18 pm #72349mcwgoatParticipant
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.
MaryMay 19, 2013 at 10:42 pm #72353jscottMember
From a new patient perspective (my wife was recently diagnosed with locally advanced Intrahepatic CC), I can see why clinical trials are not too popular.
Here is what I would say are barriers so far in my experience:
1. Trials are not a part of the diagnosis discussion. Our oncologists simply have not mentioned clinical trials as something to consider. I found out about them from my own research. I would think this is a systemic reason across all cancers.
2. The need for a new patient to do something..ANYTHING..to start treating the cancer is very powerful. We changed oncologists and Andrea moved her care to Stanford, and this delayed starting chemo by a week. This felt like a huge delay that was terribly concerning. However, once you start a therapy, that can severely limit your trial options. Given the often bleak information you run across when you first start researching ICC, the need to begin may feel especially powerful for ICC patients.
3. I am not sure exactly why, but trials seem like they are portrayed as what you do after all standard options are exhausted. Maybe this is a problem in the US? So many cancer patients may feel like they have a pretty good shot with standard options that they have not yet reached the “hail Mary” stage of a clinical trial? This is just a hunch on my part, as I don’t have first hand experience.
JasonMay 19, 2013 at 10:37 pm #72352dmj4ctjMember
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.May 19, 2013 at 9:48 pm #72351scheitrumcParticipant
We actively pursued clinical trials when my wife was first diagnosed several weeks ago. In fact, we were excited to find one which my wife could participate that was also close to home (Sloan). However, it turned out the trial was put on hold because of problems getting the drug which served as a basis for this trial.
There was only one other trial in the US where my wife was a potential candidate. Not many options available (diagnosed with ICC).May 19, 2013 at 9:38 pm #8396marionsModerator
I am preparing for a presentation on clinical trial recruitment, the Cholangiocarcinoma Foundation and other issues at the annual Drug and Information Association conference.
As you know the NCI, FDA, NIH and others are engaging us advocates in identifying issues regarding the low participation in clinical trials. At present, many if not most of these studies already are being conducted outside the US, but it is crucial for these studies to increase in this country.
The UK for example is not experiencing any difficulties with enrollment. In comparison to the US it is a small country with great infrastructure, allowing for easy access to institutions and physician’s office.
But, there are many other reasons as to why the US patient population is shying away from entering clinical trials.
Would you please be so kind and share with me your thoughts? Have you contemplated a clinical trial? Would you consider entering a study?
Thanks for any input you may be able to give to me and ultimately everyone else on this site and beyond.
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