I know the updates are getting further apart, so I apologize. Shawn completed his 5th round of chemo on 8/18/20. We had his first treatment scan on 8/28/20 and unfortunately we didn’t get the news we were hoping for.

The nodules in his lungs had more signs of cancer death; however those nodules were also still getting wider. There is a lymph node above his collarbone that got bigger which really concerned the doctors and shows that his body isn’t really responding to the chemo. The doctor couldn’t really say if the tumor in his esophagus was better or not because of the stent. Because the lymph node in his collarbone grew, Dr. Dotan wanted to change treatment options.

On 9/1/20, Shawn and I spoke with Dr. Dotan to discuss other treatment options. Dr. Dotan first started explaining that there was a second line of chemo (taxol and ram) that he could try and that would help “control” the cancer. She also mentioned that if we went with the second line of chemotherapy she believes we will be sitting here again in a few months discussing treatment options. I questioned the statement “control the cancer” and explained that our goal is wanting to see a scan that say NED which means “no evidence of the disease” (having 5 years of these clean scans would mean he is technically cured).  Dr. Dotan said that she doesn’t think we will ever see a scan that is NED because he did not respond to the first line of therapy. She explained that because the cancer has spread to other parts of his body, he will always have microscopic cancer cells floating around in his body.

The other option was a clinical trial which doesn’t always have slots and right now, Shawn would be a good candidate for it since he is young and overall healthy (other than the cancer). She explained that patients can’t get into a clinical trial if they are “too sick”. When she explained this particular clinical trial she said that it was combined with an immunotherapy drug. The clinical trial would be a drug that was approved by the FDA (an immunotherapy drug) and a new drug they are trying out. Shawn and I met with the clinical research team lead and he explained that this trial is still in the beginning phase so it doesn’t have the immunotherapy drug yet, so he would only be on the experimental drug. That did not sit well with either of us.... so in that moment we definitely felt a little hopeless. But then Dr. Dotan came back in and agreed that she also didn’t feel comfortable with the clinical trial because she didn’t know that the immunotherapy drug wasn’t included. She apologized and said that she would feel more comfortable starting him on immunotherapy since we have already tried chemo. The immunotherapy should have less of an impact on his body.  Dr. Dotan plans on sending an email to other hospitals in the surrounding area and to close by states to see if they have any clinical trials that might be better for him.

Shawn started Opdivo (Nivolumab-immunotherapy drug) on Tuesday. This immunotherapy has had a proven response for people who had esophageal cancer and it didn’t matter what their PDL1 score was. Shawn will continue to go in bi-weekly for treatments and will have another scan after 8 weeks.

Since our treatment discussion, Shawn’s appetite has increase, he spent some time at the pool with family and friends over Labor Day weekend and his spirits continue to be positive. He has stated that he is tired but he takes little naps and has been focusing on eating and trying to keep his body moving!

The comment Dr. Dotan made about not ever seeing a scan that says NED has really stuck in my head. That comment reminds me of HOW BIG OUR GOD IS and that HE has the final say. I believe that we will see a scan that says NED and I refuse to allow any doctor to tell me differently.

Thank you for all of the continued support and prayers!

teamGREEN 💚