Dear Rene and Eddie,
I read your book and it was an inspiring and full of amazing information. I was surprised to realize how my story is similar to Rene's as I was diagnosted with SS at the base of the tongue (head & neck), same size.
Unfortunatly, after three years of surgery, radio, ifosfamide, doxo, trabectedin and pazopanib, I now have several mets at the pleura, lung, mediastin.
I tried to pursuee immunotherapy but in Italy was basically impossible for sarcoma. I went a couple of times to MSK in NYC and i have been tested for HLA but i m not positive, so i am out most of the trials for NY-ESO-1.
Do you know any trial for NY-ESO-1 which does not require HLA 2-6+? the only one I know is the CMB305 but it is not recruiting yet as far as i understand and I am running out of time.
What would you do in my situation? I m quite disperate to find a trial for my SS.
Thanks in advance for your reply.
Lorenzo
Hi Lorenzo,
We're so sorry you're battling synovial sarcoma.
The specific HLA type is required for NY-ESO-1 Adoptive T cell therapy, which we discuss in Chapter 6. I also did not have the right HLA type for the NY-ESO-1 Adoptive T cell therapy clinical trial.
Another way to try to target the NY-ESO-1 protein in SS is through the NY-ESO-1 protein vaccine, which we discuss in Chapter 6 as well. This treatment does not require a specific HLA type. This is not an approved treatment, so you can see if it's available through clinical trial.
NY-ESO-1 is *one* cancer antigen that can be targeted by the immune system. However, there are other ways to generate *many* cancer antigens for the immune system to target, such as radiation and cryoablation, which is discussed in the book. Radiation is usually not good for lung tumors (I'm guessing due to the side effect), but cryoablation is very effective against lung tumor, even pleura tumor, where cryoablation can be "sprayed" to freeze tumor in the pleura. I had 3 lung tumors cryoablated in Detroit, Michigan, to kill the tumor (by freezing it), and at the same time, it generates a "cancer vaccine" inside the body. This is described in detail in Chapter 11.
Chapter 16 is a helpful chapter for trying to figure out what kind of treatment to do, one after another, to try to get a complete immune response against the cancer.
Another resource is a recent lecture I gave on "The Hope of Immunotherapy". It summaries the main concepts of combining certain immunotherapies to get a good immune response. http://www.curingcancerbook.com/blog/videos
There is much more hope with the modern immunotherapies available today. Also, the effect of diet, especially omega 3/6, has real effect on cancer (Chapter 15). Figure 43 in Chapter 15 gave us great hope and motivation to stick to the omega 3/6 regimen when my lung tumors were growing fast.
So, do not give up hope! We wish you the very best.