Melinda, it is so terrific to read all of the details about the continued success of your treatment with Dr. Rosenberg and the NIH team. About a month ago, a few weeks before I found this terrific website, I came across the May 8, 2014 NBC News article that was published about the success you have had with the Immunotherapy treatment while I was researching options for my mother, who I recently posted about in the Introductions and General Discussion topics of this forum. After a resection of about 60% of her liver and 6 months of adjuvant chemotherapy, we thought she was cancer free. Her scan at the end of the adjuvant therapy came back clear of cancer and her blood results were all coming back clean. They then scanned her again six months later and found the cancer had returned very aggressively. Not only additional tumors in her liver but metastasis to her lungs and even possibly on her spine.
When I saw the NBC News article, I was so pleased to learn about your terrific improvement and success with the trial.
I immediately got in touch with Dr. Rosenberg's team and was working with Ellen to secure a spot in the trial for my mom. Everything was looking good for her to participate and they even sent a blood kit in the mail but once they saw her most recent scan, they said she would not be eligible, apparently due to the significant spread of the cancer. We were surprised and disappointed and we did not know of any better option than to take the recommendation of the oncologists at Morristown Memorial and the GI team at Memorial Sloan Kettering and get her started on FOLFOX. I followed up with the NIH team and asked if she might become eligible if the FOLFOX is successful in shrinking her tumor and got a curious response that basically boiled down to "unlikely, but anything is possible, although we are actually not having much luck with the trial other than for some melanoma patients." I was surprised to hear that they were not considering the trial to be successful considering how terrific your treatment has been, but perhaps I misunderstood her response.
Mom is now two treatments in and it is wreaking some havoc on her body but we are holding out hope that it will be effective and, at the same time, trying to determine if there are any trials that might offer hope so we are ready to move in a different direction as quickly as possible if needed.
We are also waiting on molecular testing being conducted by MSK and holding out hope that the results present the chance for her to receive targeted treatment similar to the NIH immunotherapy treatment.
Please keep us updated on all of your successes. These positive results provide hope for all of us!
Thanks so much for all you are doing to share your story and assist others going through the same thing!