Childhood leukemia: how a deadly cancer became treatable

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.

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.

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/

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.

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.

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.

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.

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...

Made possible by government funding of basic scientific research. This is what your tax dollars bought, and what they're currently trying to destroy.

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.

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!

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.

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.

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.

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.

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

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.

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.

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.

Just a plug for the Max Foundation out of Seattle: 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.

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.

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?

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?

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/162/9/817/5832...

Small mercies and immense gratitude.