Comment by CobaltFire

Comment by CobaltFire a day ago

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My son was diagnosed with B-ALL (RUNX1) in 2020.

I don't want to go deep into it today (Fathers Day here), but he's alive and well now. We rang the bell just over two years ago.

He is enrolled in a study through the Children's Oncology Group mentioned here, and underwent an experimental modification specifically for male patients.

Specifically, the current state of treatment protocols (when he started) was that males received an extra ~6 months of treatment as there was thought that the testes could serve as a repository for the cancer. The data says that is likely not true, and that the tradeoff for the longer chemo is worse than any risk present.

We were fortunate that he hit every single "best case", from him being diagnosed very early, to all of the best possible results from his blood tests at every point.

Many of my comments talking about my experience are buried, but there is plenty that I've said here on HN.

debrisapron a day ago

Im going to think about this comment a lot today. Not in a “thoughts & prayers” way, just because this makes me so happy & proud for humanity, that we can do actually worthwhile things like this together. That’s the kind of stuff I want to think about on my silly made-up Dad holiday. Cheers!

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  • petesergeant 15 hours ago

    > we can do actually worthwhile things like this together

    As long as there aren't dramatic cuts to science funding

    Reply View 6 replies
    • cogman10 5 hours ago

      Yeah, I really want people to understand this.

      I know HN doesn't want to get political in general, but this is an incredibly terrible thing that's happening that affects everyone.

      The cuts to the NIH based purely on the politics or perceived politics of the institutions doing the research will kill people. It very likely will be a death sentence for my wife with a cancer that has treatment options available but really needs additional research.

      Everyone that lives long enough will get cancer. Researching cancer and disease treatments is universally beneficial to the population.

      Reply View 0 replies
    • anonymous_9876 11 hours ago

      NIH is facing a 40% budget cut. Cancer research would dramatically slow down.

      1. https://www.science.org/content/article/senators-press-nih-d...

      2. https://www.fightcancer.org/releases/future-cancer-cures-jeo...

      Reply View 4 replies
      • mapt 8 hours ago

        I think if we want research to survive we need to start funding it on a basis other than paycheck-to-paycheck. We need to acknowledge the adversarial nature of the current political situation.

        If you have a $50M study that takes 10 years, $50M leaves the budget on approval and goes into a foundation dedicated to that study.

        The alternative is this sort of atrocity - https://www.reddit.com/r/labrats/comments/1kh21p5/discarding...

        Reply View 3 replies
cpard 19 hours ago

I went through chemotherapy for ALL as a kid and I had to do almost an extra year of treatment because I was male, for the reasons you mention in your comment.

Male kids before me, also had to do a surgery to remove something from their testes to make sure that there wasn't any chance of having the repository for the cancer left. I was lucky enough to not have to do that.

I do find it impressive though that this is still a thing as I was treated many years ago. My feeling was always that the treatment protocols, for ALL at least, tend to get more aggressive but also much shorter. Exactly because of the tradeoffs you mentioned.

Your little one is a hero. He might be too young right now to realize what he has achieved but please keep reminding him that.

Also, something that I don't see being discussed enough when it comes to childhood cancers, is the effect it has to the family as a whole. Parents especially, do come out with their own trauma from this experience and they need to heal too.

Finally, for anyone interested.

Stanford has an amazing Adolescent and Young Adult Cancer program (SAYAC)[1], hopefully more institutions have similar programs but I can't emphasize enough the value they can bring.

Elephants and Tea [2] is a magazine for adolescent and young adult (AYA) patients, survivors, and caregivers. Great place to learn more about the experiences from the people who are there or have been there.

1. https://www.stanfordchildrens.org/en/services/adolescent-you... 2. https://elephantsandtea.org

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  • CobaltFire 6 hours ago

    Its fascinating to hear from someone who my son's enrollment would have affected. I'm hoping his data point can help tune treatment for more people in the future.

    And thank you for YOUR data point that helped my son have the option to not do those extra months.

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vdenis 9 hours ago

Hi, First time poster here, long time lurker, germline RUNX1-mutant myself. Father got AML, three decades of thrombocypenia for me, child is mutant as well, no event fortunately but under surveillance. Good news for your child!

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  • CobaltFire 6 hours ago

    Fortunately only his cancer was RUNX1, not his whole genome. It was also trisomy-21. Essentially he had what his doc described as the "stereotypical" B-ALL for individuals with Down Syndrome, but he doesn't have it.

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patates 16 hours ago

I can't even begin to think how hard that must have been for you and your son!

I wish you a belated happy fathers day, and I wish you and your son the healthiest, happiest life.

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