Long tail
I had an MRI and visit with my new neuro-oncologist yesterday. The MRI once again revealed that the tumor hasn't returned yet. My conversation with Dr. Taylor was an eye-opener to such an extent that I decided to sleep on it before sharing it with anyone other than my family and housemate.
I had some questions about survival rates, and in the course of asking I rehearsed the survival stats I was given in the beginning: an average of twelve months for people who don't take treatment, fourteen months for those who do, thirty percent survive at least three years, and only ten percent survive at least five.
"That sounds like the statistics for the whole population of people with glioblastoma," Dr Taylor said. "You need to look at the statistics for those like you who have the IDH1 mutation." She said they are now seeing that the IDH1 mutation makes a pretty significant difference in survival rates and that between having the mutation, the methylated MGMT gene (which is apparently highly correlated with having the mutation), being relatively young (under 60), having gotten most of the tumor out surgically (achieving 95% resection of the tumor is apparently more common in people with the mutation, and Dr Silbergeld seemed very confident that he had gotten as much of the tumor as humanly possible), and having survived the surgery in very good health, both physically and cognitively, she thought it was likely that my survival time would be on the long tail.
I don't know what that means exactly. I'd say it's still likely that the cancer will eventually kill me, but this still feels like a reprieve. My radiation oncologist, Dr. Halasz, was willing to say that all my favorable factors would likely put me in the 10% who live at least five years, but Dr. Taylor is saying something significantly different, to my ears. But what, exactly? That I have a strong chance of living for quite a while with this beast? I told her that my mom would be insufferable, because she's been saying this all along. I was going to be that guy who survived for twenty years and died of a heart attack, not cancer. I kept telling her she was in denial (at least in my internal dialogue with her), but maybe her optimism was correct all along. She's certainly feeling pretty smart right now.
"How was she able to understand?" Dr Taylor asked.
"She was a transcriptionist in a Pathology lab for a number of years."
"Ah, so she can actually read the lingo."
"Better than I can anyway."
The article about the mutation that I linked to echoes some of the stuff that Dr. Taylor told me while amplifying other things. They now think that the mutation occurs in some people when a lower grade glio moves up a notch. It also sounds as though one of the main helpful features, which is how I understood the positives of the methylated MGMT gene too, is that it works well with radiation and chemo to improve the body's ability to kill cancer cells. One section of the article talks about a study in which "the median survival in the IDH-mutant group was 163.4 months (13.6 years)". That was for one subgroup in the study. For another subgroup with the mutation the study showed a median survival rate of "118.7 months (9.9 years)." I can't say that I follow much of the technical discussion distinguishing the two subgroups, but either of those medians is far better than any median survival I've run into before. Of course this was one study of about three hundred people with GBM, 113 with the mutation, 222 without.
The article also says treatments are being developed to specifically target GBM patients who have the mutation. Again, the discussion is too technical for me to follow, but it all sounds pretty hopeful, which I assume is why Dr. Taylor was willing to be so optimistic right to my face. I feel torn between wild optimism on my own part and cautious skepticism. No doubt I'll need to read and discuss it further, but damn if I didn't immediately start thinking, "Maybe I *will* get to see Celine grow up!"
In other news, I started round eleven of chemo last night. Only one more after this one. I'm excited that chemo will soon be done, so I'm just feeling giddy in general today.
I had some questions about survival rates, and in the course of asking I rehearsed the survival stats I was given in the beginning: an average of twelve months for people who don't take treatment, fourteen months for those who do, thirty percent survive at least three years, and only ten percent survive at least five.
"That sounds like the statistics for the whole population of people with glioblastoma," Dr Taylor said. "You need to look at the statistics for those like you who have the IDH1 mutation." She said they are now seeing that the IDH1 mutation makes a pretty significant difference in survival rates and that between having the mutation, the methylated MGMT gene (which is apparently highly correlated with having the mutation), being relatively young (under 60), having gotten most of the tumor out surgically (achieving 95% resection of the tumor is apparently more common in people with the mutation, and Dr Silbergeld seemed very confident that he had gotten as much of the tumor as humanly possible), and having survived the surgery in very good health, both physically and cognitively, she thought it was likely that my survival time would be on the long tail.
I don't know what that means exactly. I'd say it's still likely that the cancer will eventually kill me, but this still feels like a reprieve. My radiation oncologist, Dr. Halasz, was willing to say that all my favorable factors would likely put me in the 10% who live at least five years, but Dr. Taylor is saying something significantly different, to my ears. But what, exactly? That I have a strong chance of living for quite a while with this beast? I told her that my mom would be insufferable, because she's been saying this all along. I was going to be that guy who survived for twenty years and died of a heart attack, not cancer. I kept telling her she was in denial (at least in my internal dialogue with her), but maybe her optimism was correct all along. She's certainly feeling pretty smart right now.
"How was she able to understand?" Dr Taylor asked.
"She was a transcriptionist in a Pathology lab for a number of years."
"Ah, so she can actually read the lingo."
"Better than I can anyway."
The article about the mutation that I linked to echoes some of the stuff that Dr. Taylor told me while amplifying other things. They now think that the mutation occurs in some people when a lower grade glio moves up a notch. It also sounds as though one of the main helpful features, which is how I understood the positives of the methylated MGMT gene too, is that it works well with radiation and chemo to improve the body's ability to kill cancer cells. One section of the article talks about a study in which "the median survival in the IDH-mutant group was 163.4 months (13.6 years)". That was for one subgroup in the study. For another subgroup with the mutation the study showed a median survival rate of "118.7 months (9.9 years)." I can't say that I follow much of the technical discussion distinguishing the two subgroups, but either of those medians is far better than any median survival I've run into before. Of course this was one study of about three hundred people with GBM, 113 with the mutation, 222 without.
The article also says treatments are being developed to specifically target GBM patients who have the mutation. Again, the discussion is too technical for me to follow, but it all sounds pretty hopeful, which I assume is why Dr. Taylor was willing to be so optimistic right to my face. I feel torn between wild optimism on my own part and cautious skepticism. No doubt I'll need to read and discuss it further, but damn if I didn't immediately start thinking, "Maybe I *will* get to see Celine grow up!"
In other news, I started round eleven of chemo last night. Only one more after this one. I'm excited that chemo will soon be done, so I'm just feeling giddy in general today.