by surprisetalk on 6/15/25, 1:12 PM with 92 comments
by CobaltFire on 6/15/25, 5:20 PM
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.
by akharris on 6/15/25, 4:24 PM
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.
by major505 on 6/16/25, 3:50 AM
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/
by Thomvis on 6/16/25, 10:50 AM
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.
by lysergic on 6/16/25, 6:38 AM
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.
by rglover on 6/15/25, 6:43 PM
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.
by robwwilliams on 6/15/25, 9:06 PM
“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.
by bglazer on 6/15/25, 3:51 PM
https://www.smithsonianmag.com/innovation/childhood-leukemia...
by searine on 6/15/25, 5:42 PM
by cloin on 6/16/25, 11:22 AM
by l-survivor on 6/15/25, 9:54 PM
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.
by find on 6/15/25, 5:11 PM
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!
by fakedang on 6/15/25, 8:21 PM
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.
by Vinnl on 6/15/25, 6:53 PM
by bitwize on 6/15/25, 3:59 PM
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.
by thinkcontext on 6/16/25, 6:46 PM
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.
by cue_the_strings on 6/15/25, 9:19 PM
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.
by ErigmolCt on 6/15/25, 5:03 PM
by Zaylan on 6/17/25, 8:17 AM
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.
by ceefry on 6/16/25, 6:22 PM
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.
by skissane on 6/16/25, 8:05 PM
by AdamN on 6/16/25, 2:55 PM
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.
by khelavastr on 6/17/25, 10:55 AM
by sgt101 on 6/16/25, 9:04 AM
Could the gradual reduction be attributed to the decay of radioactive isotopes in the environment?
by cyanydeez on 6/17/25, 12:50 AM
Pretty easy to cure something if it happens so often.
https://academic.oup.com/aje/article-abstract/162/9/817/5832...
by srean on 6/15/25, 3:18 PM