By Jennifer Ahlstrom | Posted - Sep 14th, 2016

 

 

 

 

To Join or Not to Join a Clinical Trial? That Is the Question!

blood cancer awarenessBlood Cancer Awareness Month: We Belong WednesdayBY CHERIE RINEKER

I recently read an article that said that while only 2 to 5 percent of all adult cancer patients join a clinical trial, 60 percent of children do. This participation seems to be directly linked to the dramatic increase of survival rates for childhood cancers. Why aren’t more of us signing up for the many trials that are out there? Though most of us know that trials are the fastest way to a cure, it seems very few of us want to, or are able, to sign up for them. Memorial Sloan Kettering conducted a survey that showed only 35% of patients would enroll in a study. Once the respondents were given more information as to how a trial worked, that number rose to 60%, showing that lack of education maybe one of the issues. Physicians themselves often seem to think that clinical trials are something only to be used as a last ditch effort, which is actually not the case. When patients were asked why they were uninterested in joining a trial, it seemed that concerns about side effects and uncertainty about insurance and out-of-pocket costs were on top of the list, with trial locations, concerns about getting placebos, and skepticism about treatment coming in right behind. Why are these issues not a concern when it comes to our children? From the research I have done about this issue, I have come to the realization that joining a trial is not as easy as it sounds. Because trials are often done down the road, many patients are simply not healthy enough to participate, either due to previous treatments, the cancer itself, or the age and overall health of the patient. This is less the case when it comes to our children. The fear that may keep an adult from participating plays much less of a role when it comes to a child. The parents are likely not going to list all the side effects that might happen to a young child. Children also know that their parents have their best interest at heart, and therefore trust the treatment. This is one of the issues that we can change about ourselves, simply by looking at the increase in survival amongst pediatric patients. By the time a trial makes it to the patient, it has already undergone years of scrutiny and testing, and often the trial starts off with lower doses and is slowly increased to see what the maximum dose can be. Another concern many patients have is about whether or not they will be given actual medicine vs. a placebo or "sugar pill". This was explained to me by my oncologist the other day who says this never happens in myeloma. He said that all patients get standard of care at the least, with some in the group being given the new drug. Never feel that you will be a guinea pig that is left without any treatment. This would be unethical and is simply not the case. Whether or not you will have to spend money out-of-pocket is a decision only you and your family can make. If you feel you would be willing to do it for your children, consider yourself worth the same amount of love and caring. What if we allowed ourselves the same level of care, the same leap of faith we are willing to take for our children, imagine how much farther along we could be on this journey toward a cure. Just something to consider. As for me, I am in no way an expert in the business of cancer, thought after two stem cell transplants and many different treatments I am somewhat of an expert in being a patient. I had to evolve to the idea of participating in trials. Like many of us, I was in shock when I was first diagnosed. I was in no way educated enough to consider the benefits and risks of joining a trial, and for that reason I chose not to enter the first one I was offered. It was a trial where they were doing a tandem stem cell transplant, vs. doing just one transplant, vs. watching and waiting. At that time, I was so afraid of the diagnosis and the chemo that the whole concept of a transplant had me petrified. At the time, the chemo and the amount of myeloma coursing through my veins made me so sick, I could not imagine having to do two stem cell transplants. My oncologist offered me the option, but respected my decision. He never pushed me to participate, even though it was done right here at MD Anderson. This built trust, something that is so important between a cancer patient and their physician. Of course, I ended up needing not only one, but two transplants about nine months later, when the nine induction cycles had merely brought my bone marrow down to 80 percent. After the first transplant, I actually volunteered for the second, something that had my stem cell doctor and me laughing,” having been my most terrified patient,” as he recalls it. Yes, we do evolve. I had hoped to be one of the lucky ones who would need a few rounds of chemo and be in remission for years. Never in my wildest dreams did I think that I would be on constant chemo with no CR in sight. Today, I am willing to do anything to get rid of this terrorist that has invaded my body, including any trial I can get my hands on that seems appropriate to my case. I still have a child to raise, so for me the answer is simple. I need to do everything and anything I can to stick around, because I know it is what my children want and need from me. The choice to do a trial should always be the patients’ and he or she should never feel forced into it. Cancer is hard enough to deal with, without feeling guilt as to whether you should join a trial or not. Once you have grieved your diagnosis, and feel like you have dealt with the fear and uncertainty that come with it, or when you feel that you simply have no other options left, and aren’t done with life yet, know that there are many trials out there that could mean the difference between life or death, not just for you, but for many to follow. All the medicine we take today was made possible by people just like you and me, willing to take a chance. I am forever grateful for the chances they took. If you are interested in joining a trial, please go to SparkCures and search on available clinical trials.   Find Myeloma Clinical Trials on SparkCures To order a copy of Cherie's book "A Pilgrimage Without End: How Cancer Healed My Broken Heart" click here.  Hope & Love, Cherie

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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