Clinical Trials - what I have learned so far.

trial¹

/ˈtraɪəl; traɪl/

noun 

1.

a.    the act or an instance of trying or proving; test or experiment

The doctors say “you should consider clinical trials now”.  Seeking clinical trials as a treatment is indeed a test I am learning.  It’s not easy nor is it simple.  You don’t simply go to the doctor and say hey, hook me up with a clinical trial.  It’s a whole new beast.  So here I am putting on my boots, picking up my shovel and getting down in the trenches to dig for a clinical trial.  I’m not alone though.  I am grateful for those who are jumping into the trench with me.  Help is coming from others who have been this route themselves, sharing their experiences and gained knowledge.  Help is coming from those who have knowledge of the science or the process.  But still, it is hard digging. 

Practically speaking, this is where I have gotten to so far.  I have learned:

1. There are a couple of national databases of clinical trials and this is a good place to search.  It nets you a long list of potential trails, based on the search criteria you ask for.  It gives you a summary of the clinical trial, location and current status.  But what do I do with this long list of potential clinical trials?  This is where it gets more difficult I have discovered. 
2. You don’t take the list to your doctor and expect him to spend the hours it would take to read through them all and advise you on the best choices (I have learned).
3. You don’t go to one hospital and expect them to inform you of, connect you to or advise you on all the clinical trials you may want to consider (I have learned).  Each hospital will tell you of the clinical trials going on within its walls.  But it’s like shopping for a new dress…you have to visit each store on its own. 
4. Clinical trials are about research and collecting data.  They are not about individual patient treatment plans.  Makes sense.  But from the view of the patient, this has an impact.
5. Seeking a clinical trial takes a lot of time and energy on the part of the patient.
6. Clinical trials – my opinion – seem to be like shooting an arrow in the dark.  Some will hit the target.  Many will not.  You roll the dice, you take your chances.
7. New treatments only come about by patients being willing to participate in clinical trials.  It is a pay it forward action.

And so the next chapter of my cancer journey has begun. 

As always, with much love,

Teresa