[HN Gopher] Childhood leukemia: how a deadly cancer became treat...
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Childhood leukemia: how a deadly cancer became treatable
Author : surprisetalk
Score : 129 points
Date : 2025-06-15 13:12 UTC (9 hours ago)
(HTM) web link (ourworldindata.org)
(TXT) w3m dump (ourworldindata.org)
| srean wrote:
| Small mercies and immense gratitude.
| bglazer wrote:
| Don Pinkel is not well known but he was a pioneer in the 60's at
| St. Jude in Memphis in developing the first combination
| treatments that pushed the childhood acute lymphoblastic leukemia
| cure rate from effectively zero to about 50%.
|
| https://www.smithsonianmag.com/innovation/childhood-leukemia...
| bitwize wrote:
| One thing that Xers and xennials grew up with that later
| generations did not necessarily -- and unlike Atari consoles,
| wood paneling, and staying outside till the street lights came
| on, they're unlikely to yell to clouds about it on TikTok -- is
| the phenomenon of "knowing that one kid in school who died of
| leukemia".
|
| Growing up, our leukemia kid was Donny Miceli. He was a great kid
| -- friendly, active, and athletic, even throughout all but the
| latest courses of his therapy. Could've been the Phineas to any
| number of potential Gene Forresters out there.
|
| When our teacher announced that Donny had died, I was saddened
| but in a "didn't show it" way. It wasn't a blow to the system. It
| was something we all had seen a long time coming.
|
| The school planted an apple tree in the courtyard in Donny's
| honor, with like a ceremony and everything.
|
| How blessed are the later generations, that far fewer trees will
| be planted in school courtyards in recognition of students who
| are no longer there, due to leukemia.
| bena wrote:
| No offense, I don't know anyone who died of leukemia or even
| had it.
|
| I think you may be experiencing a bit of the "blue car" effect.
| Of course everyone who went to your school knew someone who
| died of leukemia. They all knew the same kid.
|
| And once you get to college, I wouldn't be surprised if you had
| run into a few other people who also knew people who died of
| leukemia.
|
| But it was not as common an occurrence as you seem to think it
| was.
| YesThatTom2 wrote:
| What you're demonstrating is called survivor bias.
| stevoski wrote:
| Jason Bell was the name, I think, of the kid in my high school
| who died from leukaemia.
|
| Popular, athletic, good-looking guy. Then one day it was
| announced in the school news that he had passed away.
| jltsiren wrote:
| That depends on the size of the school you went to. With 500
| kids, it's unlikely to have even a single leukemia case in 13
| years. It gets more likely with 1000 kids. And if you went to a
| giant school with 2000 kids, there probably was a case or two.
| akharris wrote:
| My dad started his work as a Pediatric Hematologist Oncologist in
| the late 60s. He had a firm belief that cure rates could and
| would climb as a result of research and better clinical care. He
| spent his life pursuing both.
|
| When people would ask him how he managed to stay so positive - he
| was one of the happiest people I've ever known - he'd reference
| the trends highlighted in this article.
|
| That didn't change how hard it was when he lost a patient, but I
| know he always had his eyes and his mind on the future.
|
| This is an incredible example of science and medicine. Thanks OP
| for posting it.
| ErigmolCt wrote:
| It's hard to imagine the emotional weight of working in
| pediatric oncology back then, when outcomes were so bleak
| ethbr1 wrote:
| My father knew a neurosurgeon in the 70s(?), when the outcome
| statistics were pretty bleak.
|
| He asked him how he handled it, and the guy said "Because the
| few that I save wouldn't be, if we didn't do anything."
|
| Sometimes, greater than zero is the win.
| akharris wrote:
| I don't fully understand how he did it. I know he took a lot
| from the line in the Talmud that said "whoever saves a life,
| it is considered as if he saved an entire world."
|
| My mom says that his baseline was incredibly high and that he
| was incredibly resilient. He also had a big rebellious
| streak, an analytical mind, and endless compassion.
| felbane wrote:
| Sounds like you already know this, but your dad's a hero.
| Infinite respect for the folks who dedicate their lives to
| helping others.
| akharris wrote:
| Thanks for saying that.
|
| Here's a bit more about him from the obituary my sister
| wrote: https://www.northjersey.com/obituaries/pnys1147090
| hasmolo wrote:
| what a guy, your dad was a great person
| ErigmolCt wrote:
| The big caveat, though, is access. These advances are still
| largely confined to high-income countries. Replicating this
| success globally is the next frontier
| lmz wrote:
| The low income countries have more kids / higher fertility
| rates to make up for it.
| adaml_623 wrote:
| That's a revolting inhumane comment.
| robwwilliams wrote:
| Practical speaking you are right. But the main ingredient in
| success is getting dosages and timing right, not ultra-
| expensive drugs.
| find wrote:
| A typical child knows about one child with cancer. Back-of-the-
| envelope, the number a child knows would be (incidence rate of
| childhood cancer) * (typical K-8 size), but doubled since they
| observe all grades ahead and behind them. Incidence rate is about
| 20 per 100,000 and we might assume a typical K-8 is about 2000
| students, so (20 / 100000 * 2000 * 2) ~ 1.
|
| The first figure shows an order of magnitude decrease in
| mortality over the last few decades from childhood cancer. The
| average child growing up in the 70s would know a child that died
| from cancer, and today they would not!
| CobaltFire wrote:
| 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 wrote:
| 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!
| chrisweekly wrote:
| CONGRATS to you and your son. And Happy Father's Day! :)
| searine wrote:
| Made possible by government funding of basic scientific research.
| This is what your tax dollars bought, and what they're currently
| trying to destroy.
| Ylpertnodi wrote:
| Crap. And I thought it was god just being mysterious (again).
| RRWagner wrote:
| +1 +1 +1.... I'm glad that all diseases have been cured so that
| no further research with public funds is necessary /s. How can
| some humans be so short-sighted to cheer on their own
| suffering...
| rglover wrote:
| I'm an ALL Leukemia survivor (~89' to ~95') and this is
| incredibly encouraging to hear. I'll never forget the long
| hospital stays, early-morning surgeries, and now, the long-term
| impact to my life (it changes your entire personality).
|
| I hope we eventually stomp it out. No child deserves to go
| through that. Here's hoping we can take what's been learned in
| the West and see to it that all kids get access to affordable
| treatment.
| CobaltFire wrote:
| My son, not I, had ALL and is in remission.
|
| I don't know how to quantify the impact it had on him from a
| personality perspective, as he is severely autistic and barely
| speaks. He was in treatment from age 3 to 6.
|
| For the rest of his family (parents and sibling) it had a
| massive impact. I already had anxiety issues (TBI while in the
| military flipped that switch), now I have something my doc
| describes as health related PTSD.
| Vinnl wrote:
| It's amazing to consider how many people have contributed parts
| to all the improvements listed in this article. It's not as
| spectacular and doesn't get the same immediate positive feedback
| as, say, saving a drowning child, but each of them has, on
| average, probably saved multiple lives, and more lives will
| continue to be added to that tally.
| fakedang wrote:
| What the article does not mention is that one of the more recent
| key biological therapies that is used is asparaginase, which has
| proven to be extremely effective for ALL.
|
| Also surprisingly, the article did not mention that there's a
| severe shortage of this therapy currently in the world, which has
| recently affected treatment progress worldwide, especially in the
| developing world.
|
| Asparaginase can be made dirt cheaply (it's used in food
| processing for breadmaking, frying, etc, to destroy certain
| carcinogens), but the product is extremely unstable for the kind
| of purity that is required for ALL treatments. The shortage is
| because there's only one manufacturer now.
| l-survivor wrote:
| Main thing that, having had it happen to me, that I'd worry
| about w/ L Asparaginase:
| https://pmc.ncbi.nlm.nih.gov/articles/PMC4976870/. (In the
| sense of risk and monitoring, not avoiding use.)
| robwwilliams wrote:
| The explanation of "How" is not made well. Here is the crux:
|
| "This improvement in survival reflects the impact of intensive
| treatment regimens. These treatments usually still involve years
| of intensive chemotherapy, which is often physically and mentally
| challenging and can cause long-term side effects."
|
| "Intensive treatment regimens" is awkward jargon.
|
| What this should say is "the right dose for the individual
| patient given their genotype, age, and disease subtype".
|
| Progress over the last 2+ decades has involved state-of-the-art
| genotyping of key gene variants involved in handling various
| aspects of cancer therapeutics: drug transporters, drug
| metabolizing genes (P450-type), and genes that modulate excretion
| rates.
|
| What also must be highlighted is MAJOR progress in remission and
| survival without any major changes in the actual drug
| armamentarium (until very recently).
|
| Finally a shout-out to NIH programs and extramural support that
| made much of this possible. And to Saint Jude Children's Research
| Hospital in Memphis, Tennessee, with donations received from
| around the world. Bravo.
| cue_the_strings wrote:
| When I was a kid in the 90s and early 00s in Serbia, later
| Montenegro, I knew 2-3 kids that had leukemia at some point, and
| if my memory serves me well, all of them survived. One neighbor
| kid had it really rough (was in therapy for years, looked like
| hell), but still survived. Even then, the treatments were so
| available that surviving it was the expected outcome.
|
| Just years before it was quite common for children to die from it
| - I know 2 couples who lost kids to it in the 80s and early 90s.
|
| Another thing was that a couple of kids had congenital heart
| conditions. Those didn't fare that well. My classmate from
| elementary survived that with a pacemaker, but a neighbor
| suddenly died in her mid-20s, that was really sad.
| l-survivor wrote:
| I'm ALL survivor. Treated (I think - it's been a while)
| approximately from Spring '00 through 2003, a mix of middle
| school and high school.
|
| The treatment absolutely has a lasting impact - often due to the
| severe side effects of treatment. But even with notable impacts
| to short term memory and deep concentration I was still able to
| get a CS degree and work as a SWE.
|
| Something that's shocking to me: the chronic absenteeism rate
| nationally is about 30%. I barely hit the threshold for that
| (missing 10% of school) number while going through cancer
| treatment. It makes me very worried about the direction of the US
| that so many kids are missing as much school a cancer patient.
|
| It should also be noted that the treatment process is a big
| burden on families, who will probably not want their child be
| alone for extended hospital stays, but may need to for work.
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(page generated 2025-06-15 23:00 UTC)