Sit and Wait Game

I received the phone call on a Tuesday evening. By Thursday morning, my Mom and I were on a plane to Los Angeles for my initial consultation. The last minute flight was not cheap for us, but I was still working and I had saved up for rainy days like these. With any aggressive cancer, time is of the essence.

Having my Mom with me made it seem like we were on a fun girls getaway trip, but in the back of my mind, I knew and was avoiding the truth. I was extremely grateful for her presence because she has always been a pillar of strength from which I drew from.

Behind that smile, I was falling apart inside. 

As soon as I saw the Sarcoma Oncology Center, the gravity of my situation hit me. The unspoken truth was that patients are usually sent here when there is nothing left that works and all hope is lost.

The private clinic does not go through an "institutional review board" so they can open trials faster than larger institutions. They also perform many more trials than name brand hospitals. Not all the trials are promising, however. Quantity does not equal quality.

My new home.

The clinical trial that my Stanford oncologist, and my new oncologists, Dr. Chawla and Dr. Kumar, wanted me to start on was the Immune Design Open-Label Phase 2 Randomized Study 232. This clinical trial involved using a viral vector, derived from HIV. As a result, it took months for institutions to get IRB approval. In the entire United States, the Sarcoma Oncology Center in Santa Monica was the only site that was open. Only four patients were currently enrolled. I would be the fifth human ever in the entire world to receive this treatment. 

Patients may test positive for HIV, and are required to carry a special card.

How did it work?

Atezolizumab is an immune system stimulate, and increases production of specific immune system cells (dendritic cells). LV305 is an engineered viral vector that binds to the dendritic cells and changes the DNA of these cells so that it fights cancer cells. G305 trains the immune system to locate and fight my cancer cells (which express the NY-ESO-1 gene).

Image courtesy of Andrew

The first big step to qualifying for the trial was to see if my cancer cells expressed the NY-ESO-1 gene. To do this, my tissue slides and pathology report from Stanford were sent to the Sarcoma Oncology Center who then sent it to the sponsor (Immune Design) to run the tests. 

I would know the results in two weeks. Did I ever tell you that I hate playing the sit and wait game?