Wednesday, May 20, 2015


Update: May 20, 2015

Who Knew? Today is International Clinical Trial Day. James Lind is credited with conducting the very first clinical trial on May 20 in ...... wait for it......  1747. He was studying the deadly disease of scurvy. Some of us may not even know what scurvy is which is a testament to the endless potential, life saving reach and underscores the importance of clinical trials.

Clinical trials. If you are following me on twitter, you may be seeing a mess of tweets about open clinical trials. This isn't a new adventure into unchartered territory for me.

However, it has been made exponentially easier to share trials because it seems there are some very smart people working diligently to find ways to get this information into the hands of those who are able to make a difference. Patients. Trial participants.

I'm not going to go off on a tangent by attempting to cite facts and figures regarding clinical trial accruals, the length of time it takes to fill trials, the amount of money wasted because a lab is ready to roll and no one has stepped up.

The medical community bemoans the problems associated with reaching the populations they need to fill the trials. I listen to their concerns, I see what may be happening in other places and I try to pick up the ball and run whenever I can.

Research Saves Lives. Clinical trials are crucial to research. Thus, unless we begin to do something about this, for all diseases, we are never going to get where we need to be. Yes, cancer was the springboard for me into the world of advocacy.

Specifically, it was my chemobrain that brought me to the world of blogging. As the Brain Initiative unfolds, I read every study about every bit of brain research. I have to believe that findings will trickle into many different areas and help for one disease will help others, too. It's Mental Health Awareness Month. It's Cancer Research Awareness Month. I think we need to be aware of the things that speak to us 24/7/365. Are these months, days, weeks lulling us into a false sense of nothingness? The Atlantic raises some thought provoking points in a recent article.

I have participated as a WEGO Health Activist for quite some time. I have watched them evolve into a community of over 100,000 strong. They are doing things to foster relationships among all parties (sorry, that word "stakeholder" just irks me....) to achieve a more collaborative effort with the hope there will be better outcomes for many.

I am fully invested in the work of Trial Reach. Clinical trial matching services are an idea whose time has come. With the amount of information online, I'm just surprised it has taken this long for someone to occupy this space in such an effective and efficient fashion.

Then, there is Cure Click. Full disclosure. I am a Cure Click Ambassador and I participate on their advisory board. Fullest disclosure. People can offer me the moon to do things and unless I think they are on to something that makes sense, they can throw in Mercury and Mars, too. I will never endorse or participate in a venture I feel isn't directly beneficial to patients or to advance the science on behalf of patients.

Cure Click is harnessing the power of community, leveraging the power of social media to get the word out to as many people as possible when there are trials seeking participants. If you see tweets about trials, please take a moment to share them. Although I may understand the underpinnings of cancer better than I understand other diseases, I'm beyond disenfranchised with the way we treat those with mental illnesses. I have utter contempt for anyone in the field of medicine who dismisses the questions or concerns of patients or their loved ones as unimportant. That didn't play well in my world long before I knew anything about empowered patients or the world of advocacy.

Yet, I'm almost embarrassed to admit there are persons under my roof whom have accepted "because I said so" as a good enough explanation regarding medication protocol. Interestingly enough, this trial which is seeking participants for an investigational drug for high cholesterol and its impact on heart attack and stroke, was part of my steep learning curve back in October when I was advocating, and failing miserably, in the ICU from hell. Even more interestingly, I have been pushing said person under this roof to seek another doctor. After consenting to seeing the doctor I found, after having every question answered and after being told I was an "overachiever" in the information department, on Friday evening this very doctor sent me an email with some observations regarding copies of CT reports I sent over to his office.

This particular doctor does lots of clinical research and I asked if he felt there were clinical trials available for this lipid issue we were discussing. At the time, he mentioned a couple but explained why each would not be appropriate. However, Friday's email may have changed things. There could be issues with heart disease coming into play. So, I plan on making the call. This call. Because it's quite possible, there may be an eligible candidate who will soon be hearing, "because I said so" from ME.

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  1. My friend, Linda participed in a clinical trial because, as she said, it will help the next person. Even though it did not work for her she felt it was not a failure because the doctors gained information. She was adamant that clinical trials were (and are) important.

    1. Heather... Your friend is special.


      People don't fail trials. The trials fail the people. I could go off on another rant about the reporting of results... but that's a rant for another day.


  2. Clinical trials may be important but I think they are very different than they used to be. I personally would never do a trial, not knowing if I am receiving a medication or not. I have a couple of friends that are involved in a trial, but my oncologist knew better than to ask me. It all comes down to personal choice and how you feel about your doctor and what he is telling you I guess. I know it's different for everyone, as everything about this experience is.

    1. Karen.... So glad to see you. xoxox

      Curiosity has the best of me.... would you do an open label trial. No placebo?

      The placebo issue is the elephant in the room. But, when a randomized trial seems to show tremendous improvement in one arm, won't they frequently "unblind" and move everyone over to the "real" drug.

      This is an important conversation!

      Love and hugs to you..


    2. Hi AnneMarie; I guess I am just plain scared on being on a trial period, perhaps if I knew all the facts about everything. Just reading some of these blogs, some of the things woman have endured because they weren't informed makes me angry and sad at the same time. I am all for new technologies and approaches to conquering this disease though. I refused radiation because I knew that I would get lymphodema from it, and yet not one doctor mentioned it other than my naturalpath oncologist and the reconstruction surgeon much later. I think I have PTSD from this experience. LOL
      Love and Hugs back to you. So happy to connect with such an amazing woman.


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