Because T4 suppression therapy looks promising for GBM’s and other cancers based on a small observational study, I thought I would post my sons response to this treatment over time. The study can be found in Stevens Brain Tumor Library, Therapies - human Studies.
For those not familiar with my sons story, here it is. Originally diagnosed with a large Oligo 2 in 2007. It was located in the left parietal region. Received radiation and TMZ. There was no evidence of tumor until October 2014 when a GBM was diagnosed after personality changes. This was treated with TMZ, radiation and Optune. In Feb 2016 he experienced his first recurrence, three areas in the occipital lobe. Treated with SRS and TMZ and was started on Nivo. All 3 areas resolved within two months. Then in June an area of enhancement showed up in the pons and one month later a recurrence in the occipital lobe and in the area of the 2007 resection cavity. TMZ and Optune were discontinued. The small enhancing area in the resection cavity was treated with SRS in an attempt to enhance the possibility of an immune response in conjunction with Nivo. CCNU and Avastin were recommended. Concerns over Avastin are the increased migration and invasive nature of GBM’s once exposed to it. CCNU is myelosuppressive and we are trying to obtain an immune response from Nivo so we are not too excited about that.
Which brings us to the T4 suppression therapy. This was started yesterday. We will see if a response occurs and if not, or if neurologic symptoms become worse, we will continue T4 suppression and add CCNU and Avastin. The BELOB trial showed a relatively small benefit with CCNU and Avastin, with the exception of IDH-1 mutated tumors where the response was significant. My son’s tumor is IDH-1 mutated. At least the original GBM was, and I am told recurrent tumors maintain that mutation. So maybe CCNU and Avastin will prove significantly beneficial. For now, we are holding on the CCNU and Avastin. That could change quickly.
Jeremy has been on a repurposed drug and supplement cocktail throughout his GBM treatment. Both NO’s he sees have been supportive of the cocktail approach because they believe he is responding better than the typical IDH-1 mutated GBM patient.
I will keep you up to date. If the T4 suppression approach is effective, it might be worth looking into as an additional treatment for those in our group. I have contacted Dr. Hercbergs, the primary investigator in the Observational study on T4 suppression. He provided me with additional information and target FT4 levels if anyone needs this information.