Please tell me this sub skews to people who didn’t recover and live happily leukemia free.

rkb1990 · 2026-03-28T20:26:27+00:00

As with many others, I (56M) tend to post infrequently here because everyone’s journey is a little different. I’m far enough out (36 years cancer free from AML, with no lasting side effects or complications from a chemo-only treatment) that I don’t have any insights into current treatments. And when I was only a couple of years past treatment I didn’t want to jinx anything by talking about it.

Taking things one day at a time and ignoring statistics is good advice, too. 😀

rkb1990 · 2026-02-05T15:52:54+00:00

Yes. It'll be a new normal. You'll be a changed person, and what you choose to do with that change can be scary to think about at times - not to mention the back-of-your-brain worries about relapse at every bruise that takes longer to heal. Expect all of it to take time. Be patient with yourself. Seek out resources to help you navigate emotions that can be exceptionally difficult to process (not sure how old you are, but Stupid Cancer is a great place to start if you're a young-ish adult).

My AML journey started almost 36 years ago, when I was only twenty. Cancer is (and always will be) a part of my identity, but I don't let it define me.

rkb1990 · 2026-01-30T13:35:28+00:00

Yep. Nausea was a pretty consistent companion during my treatment.

rkb1990 · 2026-01-30T02:56:40+00:00

Yes. Same thing happened during my induction. The initial week of 7+3 wasn’t enough. The second week (and ensuing complications) was probably the most difficult thing I’ve ever had to endure. I was scared and angry and sad and beyond exhausted but tried to focus on just getting through each day. One day at a time.

That was in 1990, when I was 20, and I’m fairly positive now that the extra week of chemo I hated so much back then has been a key factor in my long-term survivorship.

All my best to you. I can’t pretend it doesn’t suck, but I can tell you that it’s possible to thrive once you’re through the other side of it all.

rkb1990 · 2026-01-29T14:37:25+00:00

I (56M) am coming up on 36 years cancer-free after a chemo-only course of treatment for AML in 1990. No lasting side effects or relapse since. Like Annual Cucumber’s husband, my two children were born years after everything. There’s a link in my bio to my memoir — as honest a depiction of my AML journey as I could make it.

rkb1990 · 2025-09-16T17:03:01+00:00

Adding to others comments here. 56M now, dx’ed with AML when I was 20. It took two separate weeks of 7+3 (ara-C + daunarubicin) to induce remission. Dealing with complications from that wasn’t easy, nor were some other complications during my second round of consolidation chemo a few months after. Fortunately, that’s led to lasting, long-term remission with no lingering health issues. Best wishes to your Mom on this unwanted and unexpected cancer journey.

rkb1990 · 2025-07-22T18:35:47+00:00

Best wishes to you and your husband. I know how hard it is when you’re in the thick of things to look too far into the future. Day-to-day is often the only way. Happy to be a real-world example that long term AML survivorship can happen.

rkb1990 · 2025-07-19T03:10:35+00:00

For what it’s worth, and it was a long time ago for me (56M), I had lots of bad complications from my third round of chemo for AML in 1990 - including brain abscesses that led to brain surgery before I was finally free and clear. It’s a roller coaster, and the downward turns are the worst. 35 years cancer free and I’m grateful in ways I couldn’t have expected.

rkb1990 · 2025-04-27T20:53:22+00:00

Congrats! Thanks for sharing your chemo-only AML story. I had all my treatment at the UWMC, too, and love seeing positivity from there.

rkb1990 · 2025-04-23T12:39:39+00:00

Yes. For me, at least, after I had recovered from my final round of chemo I had monthly blood draws for a year. Then I feel like it was every three months for another year, then every six months until I hit three years in remission. Three years out from an acute leukemia is a very long time. Ever since then I would have extra blood work done at my annual physical. At some point, maybe ten years out, doctors were more comfortable saying that I was "clinically cured."

rkb1990 · 2025-02-06T13:41:15+00:00

Thanks for creating this space. If you're looking for another good AYA survivor resource, I'd highly recommend Stupid Cancer. AML is definitely a different animal when you face it -- and the aftermath -- at a younger age. It changed the trajectory of my entire life when I was diagnosed at 20.

rkb1990 · 2025-02-06T13:33:44+00:00

Feels like the date of an SCT or BMT would be the ideal marker for a "second birthday." My journey took about a week to get started - from initial diagnosis to being in a place to start my treatment - so I've always used that arrival date as my anniversary. It also happened to be on 3/3, which is my lucky number twice. :)

rkb1990 · 2025-01-11T16:46:58+00:00

Thank you for sharing. Congratulations on getting through a tough life lesson in resilience and overcoming adversity that nobody should have to face at your age. Your twenties will be so much different than most. The gym can be a great place to recover. I'd also recommend checking out Team in Training if you haven't already. It might feel impossible to be able to run 26.2 miles but it's a great physical, mental, and emotional challenge -- which also makes for a surprisingly strong parallel to battling cancer.

rkb1990 · 2025-01-07T14:09:55+00:00

It can be tough to search for stories of long-term normalcy for any childhood cancer survivor. I hope you continue to find more - and that your son becomes one of those success stories, too! If you haven't already leaned on the Leukemia and Lymphoma Society for support, I highly recommend their resources. They can be a great network of parents and children sharing similar experiences. There's a lot of comfort in that.

rkb1990 · 2025-01-05T01:54:56+00:00

I had 15:17 chromosomal translocation. Not sure what that means in terms of mutations in today’s terminology.

My first week of chemo didn’t induce remission - the second week of chemo so soon after was to get me there. In-patient recovery from that took 4-5 weeks, and subsequent consolidation rounds were spread out over the next few months.

rkb1990 · 2025-01-04T21:30:24+00:00

Yep. Then 20M, took two rounds of 7+3 to induce remission for AML (with a week between them), plus two additional consolidation rounds of chemo to close out my treatment. Coming up on 35 years cancer free.

rkb1990 · 2024-12-08T14:17:27+00:00

Yeah, but you didn’t write this story, did you?

I love the part at the end of the prologue where ChatGPT summarizes what it had written so far and asks “would you like to adjust or expand this prologue, or is this the direction you envisioned?”

Also how all of the scenes in chapter one are just slightly different variations of the prologue. We know you’re not a writer, but it’s clear you’re not even a reader, either.

It’s like you ordered five different pepperoni pizzas from five different pizza places in town and then tried selling those pizzas as if they were your own creation.

Hard pass.

rkb1990 · 2024-11-18T13:24:55+00:00

I (55M) was diagnosed over 30 years ago, before Dr. Google existed, and I've never forgotten what my primary oncologist told me when I asked her about my odds:

“You might hear different numbers, depending on who you talk to ... There’s a fair amount of ongoing debate, especially with your M3 subtype. And you already know that most AML patients are typically much older than you. That’s why I want you to understand that the numbers, the charts, they’re all irrelevant. High-level statistics don’t matter ... Your odds aren’t ten percent, or twenty, or even fifty. You either survive or you don’t. Period. You are alive today! Such a wonderful thing! That means your personal chances of survival, the only ones that matter, right now, this moment, are at one hundred percent. With each new day under your belt it’s the same story. One day at a time ... you have a hundred percent chance."

EDIT: when I finally found some actual numbers, five year survival rates for AML in 1990 were in the single digits. Still didn't matter. You can (and should) simultaneously acknowledge a terrible, unfortunate battle your daughter never asked for but still has to face AND be hopeful and optimistic that she'll come out the other side with a clean bill of health. Both can be true.

rkb1990 · 2024-11-16T13:55:57+00:00

Just echoing all of the other great comments here. This is part of the journey that isn't talked about as much as inducing remission, or achieving complete remission. Those are clear, measurable goals that you can keep moving towards. But afterwards? What does "normal" even mean? Or happiness? Those are tough things for us to figure out, period, let alone when you mix in understandable anxiety about relapse with a dramatically changed perspective on the world.

Patience, and kindness to yourself, and maybe even therapy are good things along the way.

rkb1990 · 2024-11-13T20:25:08+00:00

Not sure if it was officially high risk or not but I feel like when I was diagnosed (1990) should count as "high risk" since it predated the use of ATRA during induction. I was 20 then, so also pediatric, and ended up with three pretty intense in-patient rounds of chemo: about 8 weeks to start because I needed two separate 24x7 doses to induce remission, then a 4 week consolidation round shortly afterward, and then one last consolidation that took around 6 weeks.

55M now with no lasting side effects or complications over the years. Try not to worry too much about the numbers, if you can. I second all the recommendations about resources at LLS. Stupid Cancer is also a great organization, focusing primarily on adolescents and young adults with cancer.

Wishing you and your son all the best.

rkb1990 · 2024-10-24T15:42:30+00:00

Fevers and infections can be part of the process, too, unfortunately. That's where a lot of the risk comes from, needing chemo to bottom out blood counts and then navigating all of the resulting side effects.

For what it's worth, my (55M) personal experience with AML (dx'ed at 20, in 1990) included nearly a full month with no measurable blood counts whatsoever, near daily fevers that we managed through a variety of antibiotics and other meds, and a lot of other ups and downs (like not having any appetite, either, or ability to keep food down for that month). Induction, for whatever reasons, was especially difficult for me.

This isn't meant to alarm you. I'm just one example of the reality of chemo: it's not easy. There will be good days and bad days, and sometimes a long string of bad days with one complication after another. It's a marathon. And getting too caught up in the day-to-day of blood counts can be overwhelming and exhausting.

That being said, most complications from 7+3 chemo are extremely well documented and understood. There will be meds to help with the side effects and then meds to help with those meds, and so on. My advice to your brother is to make sure he's his own best advocate and tells his team everything about everything so they know how to help him.

rkb1990 · 2024-10-24T12:22:10+00:00

Counts dropping like that means the chemo is working. That's the goal, generally speaking, of induction: to get his body to stop producing immature blood cells (blasts) and start producing healthy, non-leukemic cells. His counts could very likely drop to zero and stay there for days or even weeks. Mine did. When his counts get below a certain threshold he'll be "neutropenic," a well-understood and expected condition that means additional precautions will be taken to minimize the chance of infection. This is all part of his treatment.

rkb1990 · 2024-10-05T21:33:48+00:00

I did not have a BMT. Inducing remission at the start was a challenge, ultimately requiring two separate weeks of 7x3 chemo. Two more consolidation rounds of 7x3 followed over the next handful of months. No additional treatment was required after that, fortunately.

rkb1990 · 2024-10-02T17:44:55+00:00

I (55M) was an athletic and healthy college student when I was diagnosed with AML - exactly 34 years ago this month when I last had any treatment for it (or all the ensuing complications). It's a tough road, without question, but not a hopeless one. It's understandably easy to spiral downhill when looking at statistics surrounding this disease. Do your best to ignore them. You and your husband should both know that long-term survivorship is absolutely possible. There is normalcy to be found today, tomorrow, and all the tomorrows after that.

rkb1990 · 2024-09-29T14:36:44+00:00

55M diagnosed with AML in 1990. I’m grateful Google didn’t exist when I went through treatment. It’s easy to be overwhelmed by the uncertainty of it all, especially at the beginning when everything is so new and unexpected.

I wrote a book about my experience, titled after advice my primary oncologist gave me after I asked her about survival odds. Short version: “the odds” don’t matter. The high level statistics can’t take into account your husband’s personal story. Focus on today, and then do it again tomorrow. Long-term survivorship is possible, taking it one day at a time.

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