Saturday, September 16, 2006
Clinical trials and hope
Advocacy for ovarian cancer tends to focus very much on the need for identification of prevention and early detection measures. But it also takes the form of activism to increase funding for more effective means of treatment, and earlier access to newer modalities.
In the 16 months since my diagnosis, I have monitored the clinical trials for ovarian cancer closely, knowing thaI will have to try many different approaches if I am like the typical OC patient. The variety of approaches being offered has increased significantly during this time period. I have discussed just two of them here on my blog. OC is now considered a "chronic" disease in the sense that women can often have some semblance of quality of life while continuing to go through periodic cycles of treatment.
While a cure may not be considered a reasonable goal for us based on the numbers, remission - or at least minimally intrusive therapy - certainly is more reasonable. Ovarian cancer cells seem to be especially smart when it comes to developing resistance to the standard chemotherapy drugs, so it stands to reason that women benefit from having more options available as they work their way down the list.
Here's the rub - only a small percentage of women with ovarian cancer are in clinical trials where newer therapies may be available. Studies show that only 3% of adults choose trial participation. Even though the government provides listings of trials and guidance on how to interpret the information, it can be overwhelming for people without a medical background. The prospect of being a "guinea pig" prevents many from even considering the possibility.
Oncologists could help with this, but. in reality, most do not - they do not have a source of reimbursement for their time that would be spent searching for clinical trials for each patient and then explaining the options and helping the patient decide.
There are now programs that can help patients wade through the morass of data and medical jargon, and match people with clinical trials for which they are qualified. The best place to begin is at The Wellness Community. This website explains the phases of clinical trials, has links to listing of clinical trials, and allows one to complete the application to obtain personalized clinical trial options. For those who prefer phone contact, the program can be reached at 1-800-814-8927.
I completed the application several months ago and received 65 clinical trials around the country for which I qualified. "Caroline", the resource person who did the search for me, offered to refine the search further so that it would eliminate all Phase 1 trials, for instance. My friend Barbara called the 800 number instead of completing the online application. She received 60 trials for whihc she matched. We did not limit our searches to any specific part of the country, but you can restrict it to just trials within a certain distance from your home, if desired. When the trials are sent to you, they are arranged according to location.
That still leaves the problem of how to decide whether a trial is right for you. That is where oncologists are more likely to be able to help in explaining how the options compare and explaining the risk versus benefit considerations. Before taking clinical trials of interest to your oncologist, it is a good idea to call the number given for the study coordinator, who will be able to confirm whether you actually quaify for the trial. It is almost always an option to go to the site where the study is being conducted and have a consultation with the study physician if you would like a second opinion.
In deciding whether to pursue a clinical trial, I will mention the observations of two gyn/oncologists who deal with ovarian cancer all the time. 1) We walk a delicate tightrope between staying alive and having a quality of life that makes it worthwhile staying alive ( each of us may define that differently). 2) No matter how aggresive the approach in studies of OC treatment, even the most heroic efforts using multiple drugs, bone marrow transplantation and other physically demanding treatments have not shown a good track record in curing OC. The current bulk of evidence favors using one drug approach at a time, and if that begins to lose effectiveness, switching to another approach.
Some women may decide to go the heroic rescue route with a high-risk treatment protocol. I would not fault that; we each have to decide how to walk the tightrope for ourselves, knowing that none of us can see where the rope leads or ends. The trick is to focus on the balancing, rising to the challenge and appreciating the opportunity to stay on the rope!
Link
In the 16 months since my diagnosis, I have monitored the clinical trials for ovarian cancer closely, knowing thaI will have to try many different approaches if I am like the typical OC patient. The variety of approaches being offered has increased significantly during this time period. I have discussed just two of them here on my blog. OC is now considered a "chronic" disease in the sense that women can often have some semblance of quality of life while continuing to go through periodic cycles of treatment.
While a cure may not be considered a reasonable goal for us based on the numbers, remission - or at least minimally intrusive therapy - certainly is more reasonable. Ovarian cancer cells seem to be especially smart when it comes to developing resistance to the standard chemotherapy drugs, so it stands to reason that women benefit from having more options available as they work their way down the list.
Here's the rub - only a small percentage of women with ovarian cancer are in clinical trials where newer therapies may be available. Studies show that only 3% of adults choose trial participation. Even though the government provides listings of trials and guidance on how to interpret the information, it can be overwhelming for people without a medical background. The prospect of being a "guinea pig" prevents many from even considering the possibility.
Oncologists could help with this, but. in reality, most do not - they do not have a source of reimbursement for their time that would be spent searching for clinical trials for each patient and then explaining the options and helping the patient decide.
There are now programs that can help patients wade through the morass of data and medical jargon, and match people with clinical trials for which they are qualified. The best place to begin is at The Wellness Community. This website explains the phases of clinical trials, has links to listing of clinical trials, and allows one to complete the application to obtain personalized clinical trial options. For those who prefer phone contact, the program can be reached at 1-800-814-8927.
I completed the application several months ago and received 65 clinical trials around the country for which I qualified. "Caroline", the resource person who did the search for me, offered to refine the search further so that it would eliminate all Phase 1 trials, for instance. My friend Barbara called the 800 number instead of completing the online application. She received 60 trials for whihc she matched. We did not limit our searches to any specific part of the country, but you can restrict it to just trials within a certain distance from your home, if desired. When the trials are sent to you, they are arranged according to location.
That still leaves the problem of how to decide whether a trial is right for you. That is where oncologists are more likely to be able to help in explaining how the options compare and explaining the risk versus benefit considerations. Before taking clinical trials of interest to your oncologist, it is a good idea to call the number given for the study coordinator, who will be able to confirm whether you actually quaify for the trial. It is almost always an option to go to the site where the study is being conducted and have a consultation with the study physician if you would like a second opinion.
In deciding whether to pursue a clinical trial, I will mention the observations of two gyn/oncologists who deal with ovarian cancer all the time. 1) We walk a delicate tightrope between staying alive and having a quality of life that makes it worthwhile staying alive ( each of us may define that differently). 2) No matter how aggresive the approach in studies of OC treatment, even the most heroic efforts using multiple drugs, bone marrow transplantation and other physically demanding treatments have not shown a good track record in curing OC. The current bulk of evidence favors using one drug approach at a time, and if that begins to lose effectiveness, switching to another approach.
Some women may decide to go the heroic rescue route with a high-risk treatment protocol. I would not fault that; we each have to decide how to walk the tightrope for ourselves, knowing that none of us can see where the rope leads or ends. The trick is to focus on the balancing, rising to the challenge and appreciating the opportunity to stay on the rope!
Link
