At a Crossroads

As I noted in my last blog post, I found out about my clinical trial because I was connected to the IU Simon Cancer Care Center (IU Simon Cancer Care Center- Indianapolis).   Because IU Simon is a teaching hospital clinical trials are a well-known source of care.  That is not always the case with community hospitals.  

 

One of my challenges when diagnosed in 2012 with lung cancer was the lack of specialists in the field of lung cancer in my city.   The oncologist I initially saw (and who gave me my diagnosis) was inexperienced and made me so angry that I decided to seek a second opinion.  I ended up seeking three.   Because I was lucky enough to come into quick contact with WhatNext.com (an online cancer support group of peers) I found support and information there and was led to IU Simon, Indianapolis- one of the leading medical facilities in the nation.  

However, throughout my first round of opinions, I did talk to one other cancer facility about 45 minutes from my home town.   After talking to their oncologist (too gloomy) naturopaths, mind-body specialist, and some other specialist in their multidisciplinary foursome I never heard the word survivorship.  I was given the option of a clinical trial they were running. 

The first words out of the mouth of the nurse running this program were, “Just to be frank, I want you to know that the minute you become involved in this clinical trial we will own you.”   She also called me a cougar because she mistakenly thought my 38 year old son was my boyfriend.  That was so much for the personality of one nurse who seemed quite beleaguered.  Needless to say I had no interest in participating in that clinical trial.

I decided to go ahead and go through chemo with Dr. Einhorn at IU Simon Cancer Care.  

As anyone knows who has been involved in cancer treatment, as a patient or caregiver, cancer is a mind game and will take you to places in your head that no one really wants to imagine. 

After chemo put me into remission, and I had a good long period without cancer drugs at all, the news of progression was disappointing, but not unexpected. 

I was at a crossroads- I felt that if I went the chemo route I would go into remission again, but had been told by my oncologist that it would not last as long as the last remission.   I knew I could try another type of chemo- but that is always a toss-up.   Why not try a clinical trial with a drug that had promising results so far and would use my own immune system to fight the cancer.  

 

I had read about immunotherapy quite a bit after my diagnosis, but it was not yet available when I was diagnosed and still isn’t for most cancer patients.  

The involvement in a clinical trial was a chance for me to utilize this promising drug.  Because the hospital I lived close to (a community hospital) was participating in the trial I was given the access I needed to be able to participate.  Many cancer patients do not take part in clinical trials because of the travel involved.    The benefits to patients and community hospitals are significant when the hospital is equipped to play a part in a clinical trial.

When I was first approached about taking part in the clinical trial I am now involved in with Nivolumab, I set about finding out all I could about the drug.   My peer counselor at Lungevity, Jill Feldman, put me in touch with a man from Baltimore who had been involved in the first Phase I clinical trial for the drug in 2008.   When I spoke to him on the phone, he was excited about the drug, and told me that when he decided to go ahead with the trial his thoughts had been, “What do I have to lose?”   

He is still kicking and in great shape.  

Unlike my friend in Baltimore, my thought process did not work along the same lines as his did when making my decision.   My thoughts were more like, “What do I have to gain?” 

Frankly, I had everything to gain- and I will tell you why in a later post.