October 30, 2016 at 10:54 am #86157middlesister1Moderator
Thank you for taking part- I hope it goes well and maybe even succeeds expectations by a bit.
CatherineOctober 29, 2016 at 3:39 am #86158marionsModerator
Michelle….thanks for the explanation, your reasoning for entering this study and for your expectations coupled with tons of hope. A tidal wave of good wishes are heading your way.
MarionOctober 28, 2016 at 8:17 pm #86159mvprattMember
I commend you Marion on having info available regarding expectations. I have joined the ranks of the many folks on clinical trials. It is a phase 1 study and I am in the escalation phase. I had my first treatment yesterday. I have had to continually explain to friends and family that this trial is a way for me to take a break from chemo. That it is not mine or the investigators main aim to see my cancer ” cured”. The goal is for me to have more time with stable cancer and suffer less side effects than what I was having with chemo. A FANTASTIC perk could be shrinkage and just to throw caution to the wind,…. maybe I am the one that might have the cure…
This is so hard for my love ones to understand. The expectations are like when you get that ” scratch off” lottery ticket and you just know you are going to be a winner. It never crosses your mind that you might not get at least the two dollars you spent on it back… With these trials there may not ever be a return on our personal investment. I know that sounds bleak but that is the hard truth. My new trial oncologist was really great explaining this to my husband when we had our initial meeting. He told him that less than 5% ever respond to trial medications especially a phase 1. I could see his look of disappointment and concern at the new risk. For him it made sense to stick with what we knew was holding the cancer…. a clinical trial served him no purpose if he could not expect a win…..
Given that this is the reality of a phase 1 or 2 study it makes sense to be realistic in your expectations and know that not only are you possibly going to benefit from the study but that your involvement WILL ultimately help someone else. In addition you want to be careful and have a thoughtful discussion with your medical team regarding the aim of your participation in the study…. what expectation does the medical team have for you and how does your plan of care and personal hopes fit into that study protocol. We have to choose very wisely as so few of us make it into these trials.
So with all this being said I am beyond grateful that I have this opportunity and the patient side of me is so hopeful that we will see some amazing results.
With great Hope,
“Never stop believing in Hope because Miracles happen every day!”October 23, 2016 at 5:46 am #10837marionsModerator
Many Cancer Patients May Have Unrealistic Hopes When They Decide To Participate In Early Stage Clinical Trials
This is a one center study defining the expectations of patients entering Phase I clinical trials:
I think it’s an important read for all contemplating an early stage trial
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