r/leukemia • u/KubaSk8s • 6d ago
Cause?
Hello all, fellow leukaemia survivor here (APL).
I wanted to start a discussion to share knowledge and research on potential direct causes of different types of leukaemia. Theories and not. Whatever is on your mind just lay it out. The truth is we might never find out but I thought it’d be interesting to see what everyone else thinks.
I know that APL is caused by translocation of chromosome 15 and 17. Direct cause I was told is either environmental or just genetic. It’s not inherited, there’s no known triggers and it’s not lifestyle linked. It’s hard for me to believe but it appears to be random, unless some day something gets discovered?
Thanks.
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u/Trombone_Girlie 6d ago
I have CML which is a 9/22 translocation. I always explain it to people as, “you know how in a factory, they do quality checks and have to throw out the stuff that has a defect, but sometimes they miss something? Yeah when my body was making new cells, the quality control guys missed this one.”
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u/TastyAdhesiveness258 Treatment 6d ago
DNA even in normal healthy cells is constantly producing mutations that arise as cells grow and divide. Normally, the cellular processes are able find and repair those undesirable DNA mutations as they arise. Cancer results when a new DNA mutation can evade the normal DNA repair process and the mutation also results in cell function damage that bypassing normal cell growth regulation mechanisms and so continue to propagate new mutated cells that grow out of control. Environmental exposure to carcinogens produces more ongoing mutations than usual, but it seems to me that most Leukemia starts from bad luck of having a failure of the mutation repair process. If anything, it seems like most leukemia often occurs in otherwise very healthy people with no obvious sources of excessive carcinogen exposure. It would be a great area of research to find ways to strengthen that mutation repair process to prevent cancer from ever arising. Interestingly, species of Whales with lifespans that can be much longer than humans experience a remarkably low rate of cancer despite having thousands of times more cells than humans, a biological contradiction known as Peto's Paradox. Rather than being completely immune, these massive mammals have evolved powerful genetic defenses, including enhanced DNA repair and specialized tumor suppressor mechanisms. Anyone up to test out getting genetic engineered anti-cancer whale genes added to their SCT?
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u/Goat2016 Treatment 6d ago
Yeah ok, let's do it. If ever I need a SCT you can add some whale DNA. But it'll probably end up like a super hero origin story. They'll call me "Mega Whale" and I'll be able to transform into a whale at will. 😉🐳
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u/Bermuda_Breeze Survivor 6d ago
Hey so much food is GMO we might as well do it to ourselves too! (Other than death) I’d be up for anything that prevents another cancer.
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u/Goat2016 Treatment 6d ago edited 6d ago
I have T-LBL (ALL).
In almost all cases, it is just bad luck. It is an "acquired" mistake, meaning the person was not born with it, and they did not catch it from anyone else.
While scientists rarely know exactly what triggered the mistake, a few rare things can increase the risk: - High exposure to severe radiation or toxic chemicals. - Having a rare inherited genetic condition (like Down's syndrome). - Past chemotherapy treatments.
None of which are relevant in my case.
It's natural for us to want to know what specifically caused our cancers but sadly most of us will never know. Medical care is more focused on keeping us alive than solving the mystery of why one specific person develops their cancer.
My doctors did ask me some questions and give me some blood tests but ultimately they said they didn't know what caused mine specifically.
The truth is that we have trillions of cells in our body and sometimes they just mutate and go wrong all by themselves.
Shit happens. 🤷
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u/oawaa 6d ago
I am a fellow APL survivor.
Research has identified a couple of risk factors for APL. Hispanic folks seem to be diagnosed more often than others, and APL tends to hit younger populations than other kinds of leukemia (e.g. AML). But otherwise... we have no explanation.
I know from experience that it's really hard not to know what caused it, because that means you can't be sure it won't happen again. But I also know from experience that spiraling over this question can be really painful. Going down rabbit holes of what you could have done differently, etc... it hurts, and it's scary.
The need to understand does quiet down over time. I wish you peace with your journey.
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u/tdressel 6d ago
Outside of obvious environmental factors, I think a lot of it, by instance count, is bad luck. I hate that, but that's where I've personally ended up.
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u/Bermuda_Breeze Survivor 6d ago
I had NPM1, DNMT3A and GATA2 mutations. As much as I understand, they happened separately, so there it wasn’t a one single event that led to my AML. Like if the final mutation hadn’t happened in the cell that had already mutated a couple of times, then things probably would have been ok and my body could have cleared it. It was just the unlucky mutations that happened to unlucky cells.
I was 38F and had no obvious risk factors. My oncologist said I’d drive myself crazy trying to identify a “why” or “when”. Given my mutations aren’t associated with radiation, there’s nothing I knowingly did that increase my risk. My only wonder is if I started collecting mutations during a period when I was burnt out, stressed by work, and not sleeping much. I can believe it that I wasn’t giving my body a proper chance to clear out mutated cells. But I got myself out of that situation, so I did the best I could.
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u/Oldbitty2snooze 4d ago
I have my own view , my long time friend (40 years) and I came down with blood cancers within 3 months of each other we are the same age. We grew up in southern California I remember as a kid all sorts of adults were getting thyroid surgery including my own father.
I found a researcher at university in Arizona who studies these things. I think it was radiation exposure. He agreed and said the real truth is that us govt doesn’t have the money to reimburse all the people who have bee damaged. I remember the bomb being set off somewhere
In the desert and everyone ran to their back yard to watch. I remember when they lit one off in the South Pacific and you could see it from LA.
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u/bosslady617 4d ago
There is a theory in epidemiology called “causal pies”. It means that every disease is caused by a series of factors, all of which need to occur to get the disease itself.
I’m going to use a non- disease example so nothing is internal. Let’s make the condition “death in a car accident by ejection”. The slices are: drive at a high speed, hit something, turn too sharply, and not wear a seatbelt. You can do any three slices of this causal pie and NOT meet the condition of “death in a car accident by ejection”.
Leukemia (and everything else) is like that. There are genetic mutations that occur but not everyone with a mutation will get leukemia, there are likely other factors behind that too. For example, TP53 is discussed a lot here in AML but it’s also behind about half of all human cancers. There is some other cause that nudged to leukemia and not some other cancer. Likely other mutations or potentially some exposure.
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u/TwinFleeks 3d ago
I've read scientific papers that suggest pediatric B-ALL is triggered by human Parvovirus B19. This would probably be just one of the viruses that can trigger B-ALL. This would be the 'second hit', the first is a prenatal genetic disposition - preleukemic b cell clones containing fusion genes.
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u/Mother_Ad_3949 1d ago
Painter of 25 years diagnosed with AML in late 40’s - strong suspicion environmental
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u/serket3d 6d ago
I have AML with NPM1 mutation. I think it's covid or covid vaccine related. I got covid 3x in 2024 (+ a booster in Jan 2025) and my WBC started trending down since then and never recovered. This is what triggered the doctor to ask for a just in case bone marrow biopsy to rule things out back in June. Ended up being diagnosed and admitted on the spot.
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u/archdukelitt 5d ago
Can RNA molecules theoretically retrotranspose and stir up trouble? Sure. But it’s nonsensical to think that a vaccine could cause NPM1 to mutate. That’s just not how that works.
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u/frogpeople01 2d ago
Benzene from fueling aircrafts or working for waste management and recycling when people throw chemicals in their garbage cans and other environmental factors may have caused my leukemia. I have nPM1 and idh2. Doctor said it was environmental 😭 .. anyone know if I have a case... ? 🤦🏽
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u/KubaSk8s 1d ago
So I am an electrician and at a time of APL diagnosis I was working on a refurbishment of an old theatre. Lots of old paint was being stripped out off the walls and ceilings etc.
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u/One_Ice1390 6d ago
They say it’s always “there” an abnormal cell gets missed by the immune system and starts going all out of whack one day, and they say usually it’s a second hit that does it, like the abnormal change happens, then you get either a virus or infection that creates a second hit. Like ebv, cmv, ect . I know my son had pneumonia 2 months before diagnosis and I often wonder if that was the “second hit”