May 29, 2013 at 3:41 am #72370
Thanks so much for your responses. It pretty much sums it up:
1. patients and physicians are not aware of the study
2. physicians not pro-study
3. patients have to find their own study, try to understand and see if it presents a reasonable choice.
4. Inconvenience and cost involved prevents people from entering studies
5. Other treatments are available
Thanks again, please don’t hesitate from adding to the above. I still have some time to make changes to my presentation
MarionMay 28, 2013 at 9:04 pm #72369rosegraceMember
My MIL looked into a clinical trial at Mayo. A major reason for not entering it was because the costs, if there were complications were not covered. One of her two insurances was not going to cover Mayo anyway, so it could have potentially cost her money to be a part of the trial.May 24, 2013 at 7:16 pm #72368gavinModerator
Saw this piece on the news here in the UK today and thought that it might be of interest to you with regards to your clinical trial presentation.
Big rise in volunteers for medical trials –
Video piece that was on tonights news –
GavinMay 24, 2013 at 12:32 am #72367rinMember
My husband’s first oncologist (who also pronounced him non-resectable with “a belly and chest full of disease,” which –thank goodness!–was not the case) told us that because clinical trials were not supported by the available literature, that he did not recommend them to his patients. Of course, building a basis for future data-driven recommendations for patients seems to be the point, but at the time of the diagnosis we were too shocked to argue with the guy. Incidentally, he did not remain our oncologist for long.
In any case, our experience has been that the need to move forward with treatment options trumps the patience and persistence it takes to find and determine one’s eligibility for a study. Additionally, it takes a cancer research team to figure out where the trials are being held and how you might fit into their protocols. Since my husband has been through two different kinds of chemo and a resection in the four months since his diagnosis, we find that he’s no longer eligible for a number of trials that we’ve researched. I do not think that we would have been willing to allow the cancer to progress while we waited around to determine whether or not we fit the parameters of a trial. The day that Dr. Selby–an amazing, brilliant surgeon who sees possibilities where other physicians see boundaries–pronounced my husband resectable, he was ready to climb onto the table with whatever butterknife and bandaids were available. At that point, no trial was worth waiting for. We saw a path that gave us hope, and we jumped on it.May 23, 2013 at 12:55 pm #72366holly22aMember
I am late but I found only two trials I could participate it, the paperwork requirements are steep and nyp hospital is terrible about getting out your medical records (almost impossible) and third, my oncologists are against the trials. That’s a lot to go up against.May 22, 2013 at 5:58 pm #72365
Thanks everyone. This is helpful. Today I will finish the outlines of the presentation, but please don’t hold back from sending info to me.
Thanks all of you wonderful people.
MarionMay 22, 2013 at 4:07 pm #72364kris00jParticipant
For the first two years of my fight, everything needed to be decided ASAP! A couple of months ago, the cancer spread to a new node, but the onc didn’t feel it was “life threatening”. So I decided to do the trial. Being otherwise healthy, I am a good candidate because I don’t NEED immediate response this time. I WANT immediate response, and sure hope this new drug works.
I have an urge to help people, especially since the diagnosis, and this is the best way I know to do it.
The biggest problem I encountered was with insurance, which is a major hurdle for most patients. I think more of us would contemplate trials if insurance companies would be cooperative.May 22, 2013 at 1:36 pm #72363thebompie4Member
quality of life is a huge limiting factor. My husband doesn’t want to be far away from us for months at a time. The kids need to stay in school, and I need to keep my job, so we wouldn’t be able to travel with him.
^^^^^ yes! sweet green! those are HUGE as well!May 22, 2013 at 1:16 pm #72362sweetgreenMember
Hi Marion, This is a great question. I agree with everything posted above. Additionally:
* because there are so few options with CC, and it’s so aggressive, we didn’t want to gamble on something that hadn’t been proven to have some success.
* searching the clinical trials database is exhausting. The descriptions/search terms don’t seem to have a lot of consistency. You could search on cholangiocarcinoma and get one set of trials, and search on bile duct cancer and get another completely different set. Sometimes it’s better to search for solid tumor and then narrow it down.
* it would be helpful to have a patient advocate who can search for trials for us.
* quality of life is a huge limiting factor. My husband doesn’t want to be far away from us for months at a time. The kids need to stay in school, and I need to keep my job, so we wouldn’t be able to travel with him.May 22, 2013 at 5:36 am #72361cathy1024Participant
When I was in Nashville I applied to stay at the Hope Lodge through the American Cancer Society. It is free and offers rooms with 2 beds and a huge kitchen with locked cabinets and refrigerators to store food to let you cook all your own meals. Plus many organizations would cook for the lodge. It was awesome and I met some really great people.
CathyMay 22, 2013 at 5:18 am #72360lainyParticipant
Lisa, I just knew that!May 22, 2013 at 5:07 am #72359lisacraineParticipant
Our house is alway is always open…..we would love to help someone.
LisaMay 22, 2013 at 4:35 am #72358lainyParticipant
I just had one of my craziest thoughts ever. Please feel free to disagree, this one is way out of the box! It is cwazy! What if! What if someone fit a trial but the cost is enormous because of a place needed to stay for like 4 – 6 weeks! I know I would have no problem to offer to stay with me? What about you?May 22, 2013 at 4:33 am #72357
Thanks so much for your comments. I will present these comments at the upcoming ASCO closed door session and of course present at DIA in June. Please, be so kind and follow with your comments, because all are important to pass on to the NCI, FDA, NIH, etc.
Thanks for all your help.
MarionMay 22, 2013 at 3:27 am #72356thebompie4Member
my husband looked into several clinical trials.
because of the “usual” late stage (3 or 4) diagnosis with this cancer–
he was not eligible to participate in the one that interested him most.
as someone else mentioned, if trials are not in your area (state/town/
close proximity) the cost of travel and staying in another part of the
country for an extended period of time can be make participation
very inhibitive (cost wise).
there was one in Mass. that was ALMOST a fit for him–but he was too
far advanced (stage 4) and he also would have had to stay in Mass for
about 6 weeks (at his expense).
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