Ok so DNA sequencing came back and it opens up more options for us....in a good way....but more choices means hard decisions with so much on the line...
The Good News
- Confirmed Oligodendroglioma (better prognosis) and not an Astrocytoma (worse prognosis)
- CDKN2A and CDKN2B (sometimes written as CDKN2A/2B) are present and have not mutated away. This is good as they are genes that help suppress cancer. This indicates a better prognosis and a lower rate of spread.
- Mutant IDH-1 and not Wild type. There is an inhibitor for IDH-1 cancers (more on this later)
- 1p/19q is missing, this makes it easier to treat.
- The Dana Farber brain board (All of the neuro-oncologists + neurosurgeons + Neuro Radiologists) met and discussed my case and they have a strong recommendation for next steps.
The Less Good New
- The Tumor Mutational Burden/Megabase: 6.844. If (in general) it were 10 or above immunotherapy might have been an option. The more mutation there is the higher the likelihood is that your immune system could be trained / directed to attack the cancer cells. To be honest there was never really a discussion about immunotherapy anyway so I am guessing that the research has not been done for brain cancers yet anyway.
- There are most certainly some residual cancer cells, particles etc left in the area which will more likely than not reignite (not sure the best term) at some point in time and clump into a new tumor. They are saying that when this happens it will most likely happen in the same area and probably not a new area that could be more sensitive to another operation.
Questions
- Does what we have really classify as a grade 3? It seems that everything that came back in the DNA sequencing would lead the Dana Farber team to believe that it is Grade 2 (lower is better). But they saw SOMETHING on the slide when they did the Gross Total Resection (GTR) that would lead them to believe it is a class 3. I have been told what they saw is a qualitative measure and not a quantitative measure. So I am left confused as to what I have. My Oncologist is referring to it as a 2.5 (and that is not an official classification). But there is nothing on what a 2.5 means or what the outcome looks like.
- Do I go with Standard of Care (SOC) (which is Radiation + Chemo) or go with the inhibitor. The Brain Board recommended that I go with the IDH inhibitor. This will push off (not stop) the need for SOC. This would allow more months/years of being able to work, earn a living, and raising family without the possibility (everyone is impacted differently) detrimental impacts that are associated with SOME percentage of people who receive RT to the brain. The inhibitor is also insanely expensive (my research is showing ~$300k / year). So we are waiting to hear back from insurance if they will cover it or not.....so that is more excitement.
Where we are now
So there is still the trade off between taking a more aggressive approach vs. taking the recommended approach. I am heavily leaning towards the recommended approach. As much as I want to rip off the band aid with SOC and get this xenomorph out of me it also sounds like there is no extra longevity secured by starting radiation earlier.
The is taking a lot of emotional headspace (pun really not intended but reading this I see it) for me. I need to breathe better. I woke up this morning and forgot about all this excitement...it was nice until I remembered :-)
I was always told that hope is not a strategy. But by pushing off the RT there could be more therapies developed in the future that could help me. So....I guess: Dum spiro spero!
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