5 ms·

Childhood leukemia: how a deadly cancer became treatable

307 points by surprisetalk 1y ago

srean 1y ago
Small mercies and immense gratitude.
bglazer 1y ago
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-untreatable-dr-don-pinkel-st-jude-180959501/ https://www.smithsonianmag.com/innovation/childhood-leukemia...
bitwize 1y ago
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 1y ago
  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 1y ago
    What you’re demonstrating is called survivor bias.
  - mlyle 1y ago
    It's like 4 per 100k kids per year from ages 0-19, but a pretty high portion of that initial incidence is in elementary school ages -- so 1 per 1500 or so over the elementary to middle school years. And that's just leukemia. Between school sizes, mixing of schools going to middle school, and auxiliary networks through family and parent networks-- you were pretty dang likely to know someone or know of someone who was affected by childhood cancer. No, it's not a universal experience. In my extended social circle, I know of 3 cases of childhood cancer that would have had a high fatality rate 2-3 decades ago.
  - dontTREATonme 1y ago
    Yea got to agree, no child I knew personally or even knew of in school had cancer. However, two of my close friends in school died of other causes. And a sibling of a friend also died. So I definitely experienced loss.
  - Glyptodon 1y ago
    FWIW, someone I know thought the kid with cancer was getting away with playing hookie, and only discovered what was actually happening years later (when we were randomly catching up). Similarly, through a personal connection to the cancer kid, I learned another kid had survived Leukemia in elementary. And I don't think almost anyone else knew. So it's not really a given that everyone even knows. (At a high school with like 7 or 8 hundred kids.)
- stevoski 1y ago
  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 1y ago
  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.
  - billforsternz 1y ago
    A very HN reply to a poetic and heartfelt comment.
    - jltsiren 1y ago
      A reply to a comment with a false generalization and a personal anecdote. I'm gen X from a country where schools typically have 200-500 students. Small enough that rare things like leukemia didn't happen in most schools. They were something that happened to a kid in the news but not to a kid you kind of knew in your school. People generally didn't talk about leukemia or think about it, because it did not affect the life they experienced. Rare things still happened, but they were different for each school. In my school, someone I knew was murdered while visiting her family in Russia.
- ojbyrne 1y ago
  My sister, sadly. Long time ago now, but definitely filled with mixed emotions from this article.
- wileydragonfly 1y ago
  https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F
akharris 1y ago
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 1y ago
  It's hard to imagine the emotional weight of working in pediatric oncology back then, when outcomes were so bleak
  - ethbr1 1y ago
    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 1y ago
    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.
    - throwaway2037 1y ago
      > the line in the Talmud that said "whoever saves a life, it is considered as if he saved an entire world." I am not Jewish but I learned about this phrase watching the film Schindler's List in high school. That phrase, and listening to Ben Kingsley's character say it, has lived, rent-free, in my mind for the last umpteen years.
ErigmolCt 1y ago
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 1y ago
  [flagged]
  - adaml_623 1y ago
    That's a revolting inhumane comment.
  - selcuka 1y ago
    Disgusting. By your logic high income countries should cut funding for leukemia research and spend the money for increasing fertility as that would result in a net increase in the number of children.
- robwwilliams 1y ago
  Practical speaking you are right. But the main ingredient in success is getting dosages and timing right, not ultra-expensive drugs.
find 1y ago
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!
- wombatpm 1y ago
  Anecdata checks out. Had twin girls in my second grade class. One got leukemia. Even with a perfect match bone marrow transplant there was only one in my third grade class. Things have improved so much since 77
CobaltFire 1y ago
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 1y 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!
  - petesergeant 1y ago
    > we can do actually worthwhile things like this together As long as there aren't dramatic cuts to science funding
    - anonymous_9876 1y ago
      NIH is facing a 40% budget cut. Cancer research would dramatically slow down. 1. https://www.science.org/content/article/senators-press-nih-director-killed-grants-and-proposal-slash-agency-s-funding https://www.science.org/content/article/senators-press-nih-d... 2. https://www.fightcancer.org/releases/future-cancer-cures-jeopardy-president-proposes-massive-cuts-national-cancer-institute https://www.fightcancer.org/releases/future-cancer-cures-jeo...
searine 1y ago
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 1y ago
  [flagged]
- RRWagner 1y ago
  +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 1y ago
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 1y ago
  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.
  - rglover 1y ago
    > My son, not I, had ALL and is in remission. That's excellent to hear. Send him a high five for me. > 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. I'm sorry to hear that. My own family was definitely affected by all of it. If it will help, I'd be happy to talk whenever you'd like (email [1], phone—whatever works)—it's a hell of a lot to process/cope with especially on top of the other stuff you're dealing with—don't hesitate. [1] me@ryanglover.net
- throwaway2037 1y ago
  > it changes your entire personality I believe it. There are few other posts here that mention major mental changes. If not too personal, can you share a story to explain?
  - rglover 1y ago
    Sure. I spent a lot of time in the hospital receiving treatment. Sometimes it was a few days, sometimes it was a month. My parents were working and so while I'd see them in the morning and evenings, most days I was on my own w/ the occasional nurse or doctor pop in. That led me to have a very independent (sometimes standoffishly so—mainly because I got tired of being poked at by doctors and nurses as a kid) personality and had to learn to amuse myself and be resourceful. In addition to that, while I would attend school fairly regularly, I was "the sick kid" who was gone for weeks or a month at a time, so I didn't really form a lot of early bonds with the kids in my class. As an adult lone wolf type, I tend to smirk at that because that's essentially what I had to learn to be in those early years. Another thing that I find amusing is that I would watch a lot of movies while I was in the hospital. I remember they would always play the same few movies: - Willy Wonka (Gene Wilder version) - Ghostbusters - Gremlins What's funny is that a good chunk of my personality is a mix of the characters in these movies. I like to have fun with people and keep them on their toes like Wonka, I like to invent/build/take risk on my own ideas like the Ghostbusters (my wife also said Pete Venkman reminds her of me), and I've always been a bit of a trouble maker/chaos monkey like a gremlin. As an adult, I've noticed that I have an in-built preference toward self-sufficiency and tend to work/be alone most of the time and I'm hyper-sensitive to people "poking" at me (or someone else—I love going after a bully). I'd also say that I developed a high EQ and awareness of and for others (like an ability to quickly read people and know what they're feeling—my grandpa refers to it as "acute awareness"). Several years back the "why" of all this started to click when I read Maria Montessori's book—The Absorbent Mind [1]—on the first few years of childhood development (~0-6 years). She explains that kids are like sponges and their personality forms relative to what they experience in those first few years. When I think about the mix of experiences during those days, I can't help but laugh—that theory is dead on. I also read Thomas Sowell's [2] late-talking children because I remembered being taken to a speech therapist as a kid because I refused to talk. I had no problem talking, I just didn't want to. Even today, I have quiet phases where I just kind of drift off into my own little world and don't really talk much. Would I say that having Leukemia specifically gave me all of these traits? No, but I would say that the combination of circumstances in relation to my treatment definitely did. [1] https://www.amazon.com/Absorbent-Mind-Maria-Montessori/dp/0805041567 https://www.amazon.com/Absorbent-Mind-Maria-Montessori/dp/08... [2] https://www.amazon.com/Late-Talking-Children-Thomas-Sowell/dp/0465038352 https://www.amazon.com/Late-Talking-Children-Thomas-Sowell/d...
Vinnl 1y ago
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 1y ago
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 1y ago
  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/ https://pmc.ncbi.nlm.nih.gov/articles/PMC4976870/. (In the sense of risk and monitoring, not avoiding use.)
- cmclaughlin 1y ago
  This comment took me on a walk down memory lane... The shortage of asparaginase (brand name Erwinaze) was very stressful during my daughter's recovery! This was in 2021. She had allergic reactions to two other medicines, and Erwinaze was identified as an alternative. We ended up getting a batch of Erwinaze, but she was allergic to that too. She ended up getting it on a slow drip under full hospitalization instead of a relatively quick visit at the infusion center. If anyone else is in a similar situation, this patient advocate might be able to help: https://www.angelsforchange.org/ https://www.angelsforchange.org/
robwwilliams 1y ago
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 1y ago
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 1y ago
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.
- throwaway2037 1y ago
  > notable impacts to short term memory and deep concentration So these are permanent? Is it caused by the cancer or the drugs? Is there any peer-reviewed research on the matter? To be clear, chronic absenteeism is defined by the US Dept of Education as: "students missing 10% or more of school". Eh, that is one day every two weeks. That's not so bad. Most kids can still get a pretty good education at that level.
  - cmclaughlin 1y ago
    Hello, Here's more info on the side effects to memory. * https://pmc.ncbi.nlm.nih.gov/articles/PMC6089371/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6089371/ * https://curesearch.org/Learning-Problems-During-or-After-Treatment https://curesearch.org/Learning-Problems-During-or-After-Tre... I think this sums it up (from the NIH study): "methotrexate exposure has also been associated with persistent cognitive deficits among survivors, including impairments of memory, attention, and executive functions" My daughter recovered from Leukemia (ALL). She's healthy now, but it was a nightmare. She was in the "high risk" category until the doctors realized the chemo triggered a rare kidney disorder. Once that was treated, the chemo started to work. I've observed some issues with her memory and cognition, but I'm happy she's alive and optimistic that she'll learn to work around the challenges.
  - 1y ago
major505 1y ago
My cousin developed leukemia as kid when he was only 3 years old in the end of the seventies. At the time, specially in Brazil, the decease was a death sentence. His mother took him to dozen of doctors and specialists. His condition deteriorated fast, and she endup trying even pseudoscinece stuff like spiritual healing and mediuns. She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her. At the time, the brazilian equivalent of the FDA was debaging releasing Interferon as a threatment for kids in Brazl. She was able to put him in trials and the treatment worked on him. My cousin is still alive and kicking to this day, but unfourtunaly, he became infertile as a result of the threatment. To fulfill her promise, my auntie organized a group in the Rotary and over the years the raised donations, organize a charity auctions and received some land as a donation. In the place they started a children hospital for treatment of cancer called GPACI. The open in 1981, and today the hispital a reference of research and treatment of kids in Brazil. Here is the site if you wanna know more https://www.gpaci.org.br/ https://www.gpaci.org.br/
- srameshc 1y ago
  > She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her. And there is hospital !! This a wonderful story, thanks for sharing.
  - major505 1y ago
    yeah, thres a cool story. A wealth lady gave her a diamond neckless that was audictioned. The person who won the neckless in the auction gave it back to my aunt, so she could auction it again. The same neckless was auctioned like 3, 4 times because of that. A lot of generous people helped her pave the way, but it was her wll and determination that focused this efforts. Personally I dont have a good relationship with her, because of things she done in the family, including to my own parents, but damn if this don't goes to show that even peolpe we may think are bad can can make the world a better place. She does have a lot of good karma to expend the rest of her life.
lysergic 1y ago
My second closest childhood friend died from leukemia about ~18 years ago, when we were about ~10 years old. I still think about him sometimes and even now as I'm writing this I feel some sadness. According to my mother his mother was head nurse of pediatrics and had not noticed my friend becoming sick, and he became very sick. He was given kemo therapy and subsequent bone marrow transplant, but he didn't get better. Apparently the kemo made him blind and more afraid until his death. And his death took a toll on his family, and especially his twin sister, which their mother lashed out at and was told by their mother that "she should have been the one dead." Childhood cancer ruins so many people and relationships, and I deeply hate this thing that almost seem intrinsic to the human condition.
sgt101 1y ago
Is there any plausible connection between these statistics and the ending of atmospheric bomb testing? Also the various catastrophic releases of plutonium into the atmosphere from satellite reentry? Could the gradual reduction be attributed to the decay of radioactive isotopes in the environment?
- mkesper 1y ago
  No. This only looks at children that got leukemia.
yoko888 1y ago
[dead]
Thomvis 1y ago
My daughter died of AML earlier this year. AML is unfortunately much harder to treat than ALL. She was treated for almost three years (it came back twice). We "lived" with her in the hospital for around 1,5 years over that three year period. Many of the chemo medications she got have been a stable of AML treatment for decades. From what I understood from our doctors, the improvement in survival rate for AML has come from supportive care, i.e. the ability to keep the patient alive during treatment. Treatment of bacterial and fungal infections has gotten a lot better. AML is a very heterogeneous disease. The treatment depends a lot on the specific mutations the patient has. Research can only focus on so many target mutations at a time. We did see the progress over the three years we were there. I have high hopes that children with the same mutation as my daughter will in the near future have better chances, specifically thanks to menin inhibitors.
- theGnuMe 1y ago
  I am so sorry for your loss.
cloin 1y ago
My 8 year old completes treatment for B-ALL in a couple months. It has been a crazy 2.5 years but he’s almost through it. It’s so surprising how it all feels so routine for the care team and how prepared they are during the times that something could go wrong. When it does go wrong, you really appreciate the swarm when the entire clinic circles up to lend a hand.
- CobaltFire 1y ago
  Congratulations to your child! There is a lot I want to say as a fellow parent in that situation, but it's hard to articulate. I hope it's easier for you to kove forward (mentally) than it has been for us.
AdamN 1y ago
Just a plug for the Max Foundation out of Seattle: https://themaxfoundation.org/ https://themaxfoundation.org/ Even where these problems are more solved than they were - the access is not broad enough for everyone to benefit. The Max Foundation works towards that access.
deleted 1y ago
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ceefry 1y ago
Recently a movie was released related to childhood cancer (not specifically leukemia) called “Audrey’s Children” starring Natalie Dormer (Hunger Games, Game of Thrones). I got to see a screening of it bc of my daughter’s involvement with Camp Ronald McDonald, which happened as a result of her brother’s (my son) ALL treatment. He is a survivor - it has now been 15 years since his last dose of chemotherapy. The movie was much better than expected and it’s worth a watch imo. Definitely relevant to the advances that saved my boy’s life, and a glimpse of a few of the incredible people who contributed to those advances.
thinkcontext 1y ago
Wanted to give a plug for joining your country's marrow donor registry. As mentioned in the article one of the last ditch treatment options is a marrow stem cell transplant from a donor. Finding a compatible donor can be difficult. On average the odds of finding a match in the general population is 1:10,000, and it can be much worse for some sub-populations. National registries have greatly increased the odds of finding a matching donor but there are people that die while looking for one. Getting in the registry is easy in the US. You fill out a form on NMDP.org's website, they mail you a free kit, you swab your cheek and mail it back. Something like 1:800 people in the registry ever get contacted about being a donor, so its a pretty rare event. As far as being a donor, I believe around 90% of donations can be done by filtering the blood of the donor, the rest are done surgically. I was a donor a few years ago after matching through the registry. It was a pretty rewarding experience. Like many people I've had relatives and friends impacted in various ways by cancer. Usually, you get a very powerless feeling as you wait for the process to play out, being a donor felt good because there was something that I could do. Happy to answer questions about the process. https://www.nmdp.org/get-involved/join-the-registry https://www.nmdp.org/get-involved/join-the-registry
skissane 1y ago
My niece Summer (on my wife’s side) died from complications of leukaemia a couple of years ago, aged 13. They say the survival rate is now >=90%, but someone has to be the ~10% who don’t and unfortunately she was one of them. It wasn’t directly from leukaemia, she had a blood clot (apparently a side effect of chemotherapy) and that caused a fatal pulmonary embolism.
cyanydeez 1y ago
probably helps because it was, created in clusters, many times, as part of the industrial revolution. Pretty easy to cure something if it happens so often. https://academic.oup.com/aje/article-abstract/162/9/817/58326?redirectedFrom=fulltext https://academic.oup.com/aje/article-abstract/162/9/817/5832...
Zaylan 1y ago
When I was a kid, hearing leukemia basically meant there was no hope. These days, I know families whose kids went through treatment and are now living totally normal lives. It’s pretty amazing that survival rates went from under 10% to over 80% in just a few decades. But in a lot of places, access to basic diagnosis and treatment is still way behind. The science is there, but making sure every kid can actually benefit from it is still the real challenge. Even within the same country, your outcome can depend way too much on where you live or what you can afford.
khelavastr 1y ago
They also need to look at rates of leukemia. Could it be that populations that used to not get leukemia are getting more treatable versions than the smaller populations who got leukemia in the 70s?

307 points by surprisetalk 1y ago

Small mercies and immense gratitude.

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-untreatable-dr-don-pinkel-st-jude-180959501/ https://www.smithsonianmag.com/innovation/childhood-leukemia...

bitwize 1y ago

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 1y ago
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 1y ago
  What you’re demonstrating is called survivor bias.
- mlyle 1y ago
  It's like 4 per 100k kids per year from ages 0-19, but a pretty high portion of that initial incidence is in elementary school ages -- so 1 per 1500 or so over the elementary to middle school years. And that's just leukemia. Between school sizes, mixing of schools going to middle school, and auxiliary networks through family and parent networks-- you were pretty dang likely to know someone or know of someone who was affected by childhood cancer. No, it's not a universal experience. In my extended social circle, I know of 3 cases of childhood cancer that would have had a high fatality rate 2-3 decades ago.
- dontTREATonme 1y ago
  Yea got to agree, no child I knew personally or even knew of in school had cancer. However, two of my close friends in school died of other causes. And a sibling of a friend also died. So I definitely experienced loss.
- Glyptodon 1y ago
  FWIW, someone I know thought the kid with cancer was getting away with playing hookie, and only discovered what was actually happening years later (when we were randomly catching up). Similarly, through a personal connection to the cancer kid, I learned another kid had survived Leukemia in elementary. And I don't think almost anyone else knew. So it's not really a given that everyone even knows. (At a high school with like 7 or 8 hundred kids.)
stevoski 1y ago
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 1y ago
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.
- billforsternz 1y ago
  A very HN reply to a poetic and heartfelt comment.
  - jltsiren 1y ago
    A reply to a comment with a false generalization and a personal anecdote. I'm gen X from a country where schools typically have 200-500 students. Small enough that rare things like leukemia didn't happen in most schools. They were something that happened to a kid in the news but not to a kid you kind of knew in your school. People generally didn't talk about leukemia or think about it, because it did not affect the life they experienced. Rare things still happened, but they were different for each school. In my school, someone I knew was murdered while visiting her family in Russia.
ojbyrne 1y ago
My sister, sadly. Long time ago now, but definitely filled with mixed emotions from this article.
wileydragonfly 1y ago
https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F

akharris 1y ago

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 1y ago
It's hard to imagine the emotional weight of working in pediatric oncology back then, when outcomes were so bleak
- ethbr1 1y ago
  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 1y ago
  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.
  - throwaway2037 1y ago
    > the line in the Talmud that said "whoever saves a life, it is considered as if he saved an entire world." I am not Jewish but I learned about this phrase watching the film Schindler's List in high school. That phrase, and listening to Ben Kingsley's character say it, has lived, rent-free, in my mind for the last umpteen years.

ErigmolCt 1y ago

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 1y ago
[flagged]
- adaml_623 1y ago
  That's a revolting inhumane comment.
- selcuka 1y ago
  Disgusting. By your logic high income countries should cut funding for leukemia research and spend the money for increasing fertility as that would result in a net increase in the number of children.
robwwilliams 1y ago
Practical speaking you are right. But the main ingredient in success is getting dosages and timing right, not ultra-expensive drugs.

find 1y ago

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!

wombatpm 1y ago
Anecdata checks out. Had twin girls in my second grade class. One got leukemia. Even with a perfect match bone marrow transplant there was only one in my third grade class. Things have improved so much since 77

CobaltFire 1y ago

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 1y 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!
- petesergeant 1y ago
  > we can do actually worthwhile things like this together As long as there aren't dramatic cuts to science funding
  - anonymous_9876 1y ago
    NIH is facing a 40% budget cut. Cancer research would dramatically slow down. 1. https://www.science.org/content/article/senators-press-nih-director-killed-grants-and-proposal-slash-agency-s-funding https://www.science.org/content/article/senators-press-nih-d... 2. https://www.fightcancer.org/releases/future-cancer-cures-jeopardy-president-proposes-massive-cuts-national-cancer-institute https://www.fightcancer.org/releases/future-cancer-cures-jeo...

searine 1y ago

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 1y ago
[flagged]
RRWagner 1y ago
+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 1y ago

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 1y ago
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.
- rglover 1y ago
  > My son, not I, had ALL and is in remission. That's excellent to hear. Send him a high five for me. > 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. I'm sorry to hear that. My own family was definitely affected by all of it. If it will help, I'd be happy to talk whenever you'd like (email [1], phone—whatever works)—it's a hell of a lot to process/cope with especially on top of the other stuff you're dealing with—don't hesitate. [1] me@ryanglover.net
throwaway2037 1y ago
> it changes your entire personality I believe it. There are few other posts here that mention major mental changes. If not too personal, can you share a story to explain?
- rglover 1y ago
  Sure. I spent a lot of time in the hospital receiving treatment. Sometimes it was a few days, sometimes it was a month. My parents were working and so while I'd see them in the morning and evenings, most days I was on my own w/ the occasional nurse or doctor pop in. That led me to have a very independent (sometimes standoffishly so—mainly because I got tired of being poked at by doctors and nurses as a kid) personality and had to learn to amuse myself and be resourceful. In addition to that, while I would attend school fairly regularly, I was "the sick kid" who was gone for weeks or a month at a time, so I didn't really form a lot of early bonds with the kids in my class. As an adult lone wolf type, I tend to smirk at that because that's essentially what I had to learn to be in those early years. Another thing that I find amusing is that I would watch a lot of movies while I was in the hospital. I remember they would always play the same few movies: - Willy Wonka (Gene Wilder version) - Ghostbusters - Gremlins What's funny is that a good chunk of my personality is a mix of the characters in these movies. I like to have fun with people and keep them on their toes like Wonka, I like to invent/build/take risk on my own ideas like the Ghostbusters (my wife also said Pete Venkman reminds her of me), and I've always been a bit of a trouble maker/chaos monkey like a gremlin. As an adult, I've noticed that I have an in-built preference toward self-sufficiency and tend to work/be alone most of the time and I'm hyper-sensitive to people "poking" at me (or someone else—I love going after a bully). I'd also say that I developed a high EQ and awareness of and for others (like an ability to quickly read people and know what they're feeling—my grandpa refers to it as "acute awareness"). Several years back the "why" of all this started to click when I read Maria Montessori's book—The Absorbent Mind [1]—on the first few years of childhood development (~0-6 years). She explains that kids are like sponges and their personality forms relative to what they experience in those first few years. When I think about the mix of experiences during those days, I can't help but laugh—that theory is dead on. I also read Thomas Sowell's [2] late-talking children because I remembered being taken to a speech therapist as a kid because I refused to talk. I had no problem talking, I just didn't want to. Even today, I have quiet phases where I just kind of drift off into my own little world and don't really talk much. Would I say that having Leukemia specifically gave me all of these traits? No, but I would say that the combination of circumstances in relation to my treatment definitely did. [1] https://www.amazon.com/Absorbent-Mind-Maria-Montessori/dp/0805041567 https://www.amazon.com/Absorbent-Mind-Maria-Montessori/dp/08... [2] https://www.amazon.com/Late-Talking-Children-Thomas-Sowell/dp/0465038352 https://www.amazon.com/Late-Talking-Children-Thomas-Sowell/d...

Vinnl 1y ago

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 1y ago

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 1y ago
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/ https://pmc.ncbi.nlm.nih.gov/articles/PMC4976870/. (In the sense of risk and monitoring, not avoiding use.)
cmclaughlin 1y ago
This comment took me on a walk down memory lane... The shortage of asparaginase (brand name Erwinaze) was very stressful during my daughter's recovery! This was in 2021. She had allergic reactions to two other medicines, and Erwinaze was identified as an alternative. We ended up getting a batch of Erwinaze, but she was allergic to that too. She ended up getting it on a slow drip under full hospitalization instead of a relatively quick visit at the infusion center. If anyone else is in a similar situation, this patient advocate might be able to help: https://www.angelsforchange.org/ https://www.angelsforchange.org/

robwwilliams 1y ago

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 1y ago

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 1y ago

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.

throwaway2037 1y ago
> notable impacts to short term memory and deep concentration So these are permanent? Is it caused by the cancer or the drugs? Is there any peer-reviewed research on the matter? To be clear, chronic absenteeism is defined by the US Dept of Education as: "students missing 10% or more of school". Eh, that is one day every two weeks. That's not so bad. Most kids can still get a pretty good education at that level.
- cmclaughlin 1y ago
  Hello, Here's more info on the side effects to memory. * https://pmc.ncbi.nlm.nih.gov/articles/PMC6089371/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6089371/ * https://curesearch.org/Learning-Problems-During-or-After-Treatment https://curesearch.org/Learning-Problems-During-or-After-Tre... I think this sums it up (from the NIH study): "methotrexate exposure has also been associated with persistent cognitive deficits among survivors, including impairments of memory, attention, and executive functions" My daughter recovered from Leukemia (ALL). She's healthy now, but it was a nightmare. She was in the "high risk" category until the doctors realized the chemo triggered a rare kidney disorder. Once that was treated, the chemo started to work. I've observed some issues with her memory and cognition, but I'm happy she's alive and optimistic that she'll learn to work around the challenges.
- 1y ago

major505 1y ago

My cousin developed leukemia as kid when he was only 3 years old in the end of the seventies. At the time, specially in Brazil, the decease was a death sentence. His mother took him to dozen of doctors and specialists. His condition deteriorated fast, and she endup trying even pseudoscinece stuff like spiritual healing and mediuns. She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her. At the time, the brazilian equivalent of the FDA was debaging releasing Interferon as a threatment for kids in Brazl. She was able to put him in trials and the treatment worked on him. My cousin is still alive and kicking to this day, but unfourtunaly, he became infertile as a result of the threatment. To fulfill her promise, my auntie organized a group in the Rotary and over the years the raised donations, organize a charity auctions and received some land as a donation. In the place they started a children hospital for treatment of cancer called GPACI. The open in 1981, and today the hispital a reference of research and treatment of kids in Brazil. Here is the site if you wanna know more https://www.gpaci.org.br/ https://www.gpaci.org.br/

srameshc 1y ago
> She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her. And there is hospital !! This a wonderful story, thanks for sharing.
- major505 1y ago
  yeah, thres a cool story. A wealth lady gave her a diamond neckless that was audictioned. The person who won the neckless in the auction gave it back to my aunt, so she could auction it again. The same neckless was auctioned like 3, 4 times because of that. A lot of generous people helped her pave the way, but it was her wll and determination that focused this efforts. Personally I dont have a good relationship with her, because of things she done in the family, including to my own parents, but damn if this don't goes to show that even peolpe we may think are bad can can make the world a better place. She does have a lot of good karma to expend the rest of her life.

lysergic 1y ago

My second closest childhood friend died from leukemia about ~18 years ago, when we were about ~10 years old. I still think about him sometimes and even now as I'm writing this I feel some sadness. According to my mother his mother was head nurse of pediatrics and had not noticed my friend becoming sick, and he became very sick. He was given kemo therapy and subsequent bone marrow transplant, but he didn't get better. Apparently the kemo made him blind and more afraid until his death. And his death took a toll on his family, and especially his twin sister, which their mother lashed out at and was told by their mother that "she should have been the one dead." Childhood cancer ruins so many people and relationships, and I deeply hate this thing that almost seem intrinsic to the human condition.

sgt101 1y ago

Is there any plausible connection between these statistics and the ending of atmospheric bomb testing? Also the various catastrophic releases of plutonium into the atmosphere from satellite reentry? Could the gradual reduction be attributed to the decay of radioactive isotopes in the environment?

mkesper 1y ago
No. This only looks at children that got leukemia.

yoko888 1y ago

[dead]

Thomvis 1y ago

My daughter died of AML earlier this year. AML is unfortunately much harder to treat than ALL. She was treated for almost three years (it came back twice). We "lived" with her in the hospital for around 1,5 years over that three year period. Many of the chemo medications she got have been a stable of AML treatment for decades. From what I understood from our doctors, the improvement in survival rate for AML has come from supportive care, i.e. the ability to keep the patient alive during treatment. Treatment of bacterial and fungal infections has gotten a lot better. AML is a very heterogeneous disease. The treatment depends a lot on the specific mutations the patient has. Research can only focus on so many target mutations at a time. We did see the progress over the three years we were there. I have high hopes that children with the same mutation as my daughter will in the near future have better chances, specifically thanks to menin inhibitors.

theGnuMe 1y ago
I am so sorry for your loss.

cloin 1y ago

My 8 year old completes treatment for B-ALL in a couple months. It has been a crazy 2.5 years but he’s almost through it. It’s so surprising how it all feels so routine for the care team and how prepared they are during the times that something could go wrong. When it does go wrong, you really appreciate the swarm when the entire clinic circles up to lend a hand.

CobaltFire 1y ago
Congratulations to your child! There is a lot I want to say as a fellow parent in that situation, but it's hard to articulate. I hope it's easier for you to kove forward (mentally) than it has been for us.

AdamN 1y ago

Just a plug for the Max Foundation out of Seattle: https://themaxfoundation.org/ https://themaxfoundation.org/ Even where these problems are more solved than they were - the access is not broad enough for everyone to benefit. The Max Foundation works towards that access.

deleted 1y ago

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ceefry 1y ago

Recently a movie was released related to childhood cancer (not specifically leukemia) called “Audrey’s Children” starring Natalie Dormer (Hunger Games, Game of Thrones). I got to see a screening of it bc of my daughter’s involvement with Camp Ronald McDonald, which happened as a result of her brother’s (my son) ALL treatment. He is a survivor - it has now been 15 years since his last dose of chemotherapy. The movie was much better than expected and it’s worth a watch imo. Definitely relevant to the advances that saved my boy’s life, and a glimpse of a few of the incredible people who contributed to those advances.

thinkcontext 1y ago

Wanted to give a plug for joining your country's marrow donor registry. As mentioned in the article one of the last ditch treatment options is a marrow stem cell transplant from a donor. Finding a compatible donor can be difficult. On average the odds of finding a match in the general population is 1:10,000, and it can be much worse for some sub-populations. National registries have greatly increased the odds of finding a matching donor but there are people that die while looking for one. Getting in the registry is easy in the US. You fill out a form on NMDP.org's website, they mail you a free kit, you swab your cheek and mail it back. Something like 1:800 people in the registry ever get contacted about being a donor, so its a pretty rare event. As far as being a donor, I believe around 90% of donations can be done by filtering the blood of the donor, the rest are done surgically. I was a donor a few years ago after matching through the registry. It was a pretty rewarding experience. Like many people I've had relatives and friends impacted in various ways by cancer. Usually, you get a very powerless feeling as you wait for the process to play out, being a donor felt good because there was something that I could do. Happy to answer questions about the process. https://www.nmdp.org/get-involved/join-the-registry https://www.nmdp.org/get-involved/join-the-registry

skissane 1y ago

My niece Summer (on my wife’s side) died from complications of leukaemia a couple of years ago, aged 13. They say the survival rate is now >=90%, but someone has to be the ~10% who don’t and unfortunately she was one of them. It wasn’t directly from leukaemia, she had a blood clot (apparently a side effect of chemotherapy) and that caused a fatal pulmonary embolism.

cyanydeez 1y ago

probably helps because it was, created in clusters, many times, as part of the industrial revolution. Pretty easy to cure something if it happens so often. https://academic.oup.com/aje/article-abstract/162/9/817/58326?redirectedFrom=fulltext https://academic.oup.com/aje/article-abstract/162/9/817/5832...

Zaylan 1y ago

When I was a kid, hearing leukemia basically meant there was no hope. These days, I know families whose kids went through treatment and are now living totally normal lives. It’s pretty amazing that survival rates went from under 10% to over 80% in just a few decades. But in a lot of places, access to basic diagnosis and treatment is still way behind. The science is there, but making sure every kid can actually benefit from it is still the real challenge. Even within the same country, your outcome can depend way too much on where you live or what you can afford.

khelavastr 1y ago

They also need to look at rates of leukemia. Could it be that populations that used to not get leukemia are getting more treatable versions than the smaller populations who got leukemia in the 70s?