Saw an oncologist at MD Anderson to talk about their TIL/ACT trial, and to get a general second opinion.
TIL/ACT - Under terms of their trial, they could harvest TIL (Tumor Infiltrating Lymphocytes) from brain-based tumors -- if and only if the neurosurgery was performed at MDA -- but even if they were then successful in growing more TIL (billions), they would have to freeze the cells at that point. They would not have been able to re-infuse them back into me at this time. That's simply the terms of the clinical trial.
Other nuances: Growing TIL is successful more than 50% of the time, but not 100% of the time. And from brain tumors, it's a even a little bit harder to harvest TIL. And for any previously radiated area (cyberknife/Gamma Knife), that's more problematic as there is probably a lot of dead cell material from that area.
So I didn't necessarily miss an opportunity, at least not a clear-cut one, with my May brain tumors. Even if I had the neurosurgery at MDA, and even if they successfully grew TIL, they could not as of yet have re-infused me.
It seems I had to travel to Houston with an in-person appointment with an oncologist to get most of these finer nuances of details about the TIL/ACT trial.
WBR: She mentioned the use of Whole Brain Radiation (WBR) as a prophylactic measure that is often used with brain tumor patients. My current team hasn't really pushed WBR treatment, most likely due to the severe possible side affects.
IPI: She thinks this was a really good move on my doctors' part. Her best recommendation for me is more IPI, maintenance doses. She thinks I have a good case to make that I'm a responder, because nothing is visible at the gross level available in my 3-month scans. I should look for clinical trials (yes IPI Is approved but there are ongoing trials in combination with other drugs, etc.). And on the basis that I'm a responder, look at invoking any kind of compassionate use clause that may exist, with the drug company or with the trial.
Also, the higher dosage level used in many trials (10 rather than FDA-approved 3 mg/kilogram body weight) would likely be plus for me as well because I haven't had problems with the lower dose, and the higher dose (which has a higher side effect rate) also has a higher response rate.
Anti-PD1: The biggest problem in general with anti-PD1 at the moment is there are no trial openings, and for me, all current anti-PD1 trials exclude previous treatment with IPI. However, the previously treated with IPI exclusion is expected to change, with the likelihood of future cohorts or new trials. I would need to make the case that as an IPI responder I should be allowed into the trial. A trial with IPI in combination with anti-PD1 would be something to pursue as well.
TIL/ACT - Under terms of their trial, they could harvest TIL (Tumor Infiltrating Lymphocytes) from brain-based tumors -- if and only if the neurosurgery was performed at MDA -- but even if they were then successful in growing more TIL (billions), they would have to freeze the cells at that point. They would not have been able to re-infuse them back into me at this time. That's simply the terms of the clinical trial.
Other nuances: Growing TIL is successful more than 50% of the time, but not 100% of the time. And from brain tumors, it's a even a little bit harder to harvest TIL. And for any previously radiated area (cyberknife/Gamma Knife), that's more problematic as there is probably a lot of dead cell material from that area.
So I didn't necessarily miss an opportunity, at least not a clear-cut one, with my May brain tumors. Even if I had the neurosurgery at MDA, and even if they successfully grew TIL, they could not as of yet have re-infused me.
It seems I had to travel to Houston with an in-person appointment with an oncologist to get most of these finer nuances of details about the TIL/ACT trial.
WBR: She mentioned the use of Whole Brain Radiation (WBR) as a prophylactic measure that is often used with brain tumor patients. My current team hasn't really pushed WBR treatment, most likely due to the severe possible side affects.
IPI: She thinks this was a really good move on my doctors' part. Her best recommendation for me is more IPI, maintenance doses. She thinks I have a good case to make that I'm a responder, because nothing is visible at the gross level available in my 3-month scans. I should look for clinical trials (yes IPI Is approved but there are ongoing trials in combination with other drugs, etc.). And on the basis that I'm a responder, look at invoking any kind of compassionate use clause that may exist, with the drug company or with the trial.
Also, the higher dosage level used in many trials (10 rather than FDA-approved 3 mg/kilogram body weight) would likely be plus for me as well because I haven't had problems with the lower dose, and the higher dose (which has a higher side effect rate) also has a higher response rate.
Anti-PD1: The biggest problem in general with anti-PD1 at the moment is there are no trial openings, and for me, all current anti-PD1 trials exclude previous treatment with IPI. However, the previously treated with IPI exclusion is expected to change, with the likelihood of future cohorts or new trials. I would need to make the case that as an IPI responder I should be allowed into the trial. A trial with IPI in combination with anti-PD1 would be something to pursue as well.
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