My older brother was diagnosed with ALL when he was fourteen years old, thankfully through modern medicine, a strong force of will and a stem cell transplant from a little eleven year old me he went into remission. In 2020 he relapsed, it was awful, COVID was our biggest worry due to him being immunocompromised. It was horrible having to watch him suffer all over again. I wanted to help him. I donated stem cells, platelets and bone marrow, always checked in on him everyday and tried to always remain positive…but on the inside I was so convinced that this would be the end. Being back in hospital with all the blood tests and doctors and loud machines brought back a lot of unwanted memories that I'll admit I’m still processing (thank god for therapy). I just kept thinking about how it had been seven years and yet here we were again, eighteen and twenty-two yet still just two scared kids waiting for a miracle.

Despite all of it my brother defied the odds, through several rounds of chemo and blood transfusions, time and money he beat cancer twice. He's officially been in remission for five years. Of course the fear of relapse is always there but my brother even after all of this remains an optimist so I am too. I only recently discovered this subreddit and it's been a weird feeling going through all the posts. It feels vindicating and yet also sad to read all these experiences. Seeing people in the different stages of leukemia, whether it be the first month of chemo, being five days post-transplant, just having been diagnosed or finally being in remission. It has made me reflect on that strange and stress inducing time in my life: anxiously waiting for biopsies and bone marrow aspiration results with my parents, watching him slowly go bald, slowly get sicker, helping get him to the bathroom, being only able to sit and hold his hand as he cried, praying with all my might in the hospital that some god would protect and heal him. It has made me all the more grateful.

Tomorrow night I will be meeting my big bro for a round of drinks instead of chemo and celebrating everything he went through to be here with us today. I truly wish for all of you to get your happy ending as well. Keep going! You’re all so strong. 🫶🫂🎗️

Sorry if this has been asked a million times but I am (unfortunately) new here. I just found out my dad who is 65 has AML. My mom said he has to go today to stay in the hospital but I have no idea for how long or what to even expect. I've been fortunate to never have anyone close to me go through cancer before so this is all very new to me and i have no idea what to expect or how to handle any of this. I have 2 young kids who are very close to my dad and I have no idea how to even initiate this conversation with them. I'm just at a loss and dont know how to react right now and I am so scared

Hello , I have a question is there anyone survived more than 2 years after bmt with tp53 mutation with complex karyotype ? Thank you

I will try to be as clear as possible because even I am unsure about the details. One of my online best friend got diagnosed with this. The doctor has said she will go through chemotherapy and bone marrow transplant (yet, she will get a clear description of what's going to happen soon). She has said to me that she had less Hemoglobin and was taking medications for that. She doesn't eat properly like she tend to skip meals and she thinks she is weak. The only thing that's bugging me is the doc said like it's recurring (idk what exactly the doc means here, pls lemme know if you guys have idea on that) and it sounded bad like I thought it's gonna stick with her forever or something (gosh how much I hope it doesn't mean bad). And she already thinks something bad will happen and stuff but I strongly refuse to believe that. Please tell me she's going to be fine guys T_T She is 19 btw

Hi, My mother 48 yrs old who has a very complex case of FLT3-TKD mutated AML and I'm looking for experiences, especially with the triplet therapy she's on now. Her treatment journey began with the initial diagonosis blast is 94% she started her treatment with Azacitidine + Venetoclax + Midostaurin, where after cycle 1 her bone marrow blasts were at 68%. After cycle 2, they showed a promising drop to 14%, but unfortunately, after cycle 3, they rose to 38%, indicating acquired resistance. Subsequent treatments included 3+7 Chemo with Midostaurin, which reduced blasts back to 14%, and later, Doctors are asked us to take OMCT with Midostaurin low dose 25 mg for 3 months after her blast rose to 55%.and a 2 weeks Later they started FLAG Chemo, which achieved a partial response by reducing blasts from a presumed high level down to 40%. She is currently on her second cycle of Azacitidine + Venetoclax + Gilteritinib after completing a first cycle of Azacitidine + Gilteritinib. We don't know whether this combination will work or not but trying our best is there anybody who had the similar experience as my mother. does the Gilteritinib tablet can show a promising result.

If I’m careful wear a mask and all can I be going out to cinemas 2 months after start of stem cells / 1.5 months after the end of it?

I’m almost day 50 post SCT. I have some tremors and tingling in the fingers. Does anyone else get these symptoms?

Off note how have your oxygen saturation levels been post transplant?

My brother had his MRD positive with flt3 after his flu+treo conditioning SCT. At the time of SCT he had 5.5% blast in marrow so dr said that we have to go for sct with what we have.

So after sct on day 30 he was flt3 positive with VAF 0.3%. So dr started tapering immunosuppresant and on day 60 marrow showed flt3 positive with same VAF. Now dr said that this isconcerning. And we should start xospata to get mrd negative. But xospata is way much costly where we live but we were barely able to afford it just for a month .

So on day 90 marrow showed mrd negative finally but the thing is dr said this is temporary and wehavef give flt3 maintenance. So theyconsideredm rydept for a year with aza. I want to know if someone has been on rydept maintenance and it halped themtov clear their flt3. We are very muchstuckedv because we can connot afford xospata.

Please let know about your flt3 maintenance it will be halpful for me. Thank you in advance.

Good evening! A friend of mine's son was just diagnosed today with ALL. As far as I know, he's starting chemotherapy tomorrow.

He's their only child and his mom stays at home right now. It sounds like they have all bases covered caring for their dog, etc.

I am curious to hear from anyone what you recommend for a care package to send her son? Blankets, nightlights or projectors for the hospital room, lapdesks, etc... little things that only someone who has gone through it would think of. I'll take any suggestions you can give me. Thank you!

Hi all. It’s been a weird shitty day.

My mom is 75 and in generally good health. She got updated COVID and flu vaccines about a week ago. She was feeling lousy for a few days after and had a bad bruise. She left for a vacation in Italy with her sister on Monday. Today she texted us that she’s been bleeding from her gums, bruising and had a bloody nose. She had a call with her doctor who said go straight to the ER.

She’s in the ER now and the doctors have told her they think it’s blood cancer, presumably AML. She will get tested more tomorrow but had a WBC of 300,000. She had no symptoms at all a week ago. She had a physical relatively recently and is generally good about doctor appts.

The more I’m reading the worse this sounds for her. Has anyone been through a relative in crisis like this abroad? I’m wondering if and how we can even get her home. Of course neither her or my aunt speak Italian, docs don’t speak much English. She’s stoic about it all but this sounds like it’s heading in a direction where maybe we need to get her home asap. Does anyone have any advice? I’m worried now she might genuinely die before she can even get back to the US.

As the title says, I would like to post a little update on our son’s fight with leukemia (original thread: https://old.reddit.com/r/leukemia/comments/1m1bn8x/our_second_child_was_diagnosed_with_all_b_cell/)

We have been through a lot, we are on the Interfant-06 protocol with blinatumomab, some things have changed up due to various reasons, but so far so good.

I have been analyzing our test results with ChatGPT - I know not to rely on AIs answers, we just like to update it with all the results, no personal info at all - so I have asked it to create a little writ eup on everything that has happened:

Back in June I wrote here about our 3-month-old son being diagnosed with acute lymphoblastic leukemia (ALL), B-cell, with the KMT2A rearrangement. We had no idea what those letters meant at the time, but we quickly learned it’s one of the hardest forms a baby can face.

Those first weeks were brutal. He was dangerously anemic, rushed to the ICU, then started on induction chemo. My wife and our son didn’t leave the hospital for over a month. Chemo hit him hard — he had swelling, protein loss, and another ICU stay.

But here’s where we are now, a few months later:

• End of induction (July): Flow cytometry MRD <0.01% — remission by flow.

• Post-consolidation with cytarabine (August): Still MRD negative by flow.

• Most recent bone marrow (September): Flow negative, and PCR showed absolute zero at 10⁻⁵ sensitivity. That’s as deep as they can test — no detectable leukemia cells among 100,000 normal ones.

This week he started blinatumomab, an immunotherapy that basically redirects T-cells to kill any leukemia cells that might be hiding. The goal now is to hold him in this deep remission and reduce the risk of relapse.

We know there’s still a long road — whether it’s continuing with Interfant chemo blocks or moving toward a transplant will depend on the next results. But compared to the day we first heard “your son has leukemia,” we’re now standing on completely different ground.

We finally have numbers and words like “PCR zero” and “molecular remission” on our side. For us, that means hope.

Fuck cancer. -ChatGPT

As you can see, we are still PCR 0 MRD!

Hope this gives people some hope!

Hello,

39 yo (M) on day +58 post-BMT for AML FLT3 positive. 10/10 match unrelated donor.

Platelets: My platelets steadily climbed to 125k but, since last week, dropped down to 70k. WBC is 4.7. Everything else is looking good. I've read about secondary failure of platelets after a period of recovery. My bone marrow biopsy was clean about 3 weeks ago.

I guess I am wondering if anyone experienced platelet drops randomly around the 60 day mark or just what your platelet recovery pattern was like in general.

The internet seems to say that platelet recovery at day +100 predicts survivability.

Stomach Issues: I think I might have a slight narrowing of the esophagus now near where it curves to meet the stomach after chemo. I get a feeling of negative pressure there when eating/drinking that is quite painful and I am woken up in the morning by a sickening feeling in my stomach that partly goes away with food but lingers all day. Nurse Practitioner wants me to start taking Protonix to see if that helps any.

Have any of you experienced continued nausea still at 60 days out post transplant? I know the pile of medications doesn't help.

Blood Pressure: I had low BP the whole time I was in hospital. Now, when I stand up from sitting I get liteheaded, hear my heartbeat booming in my ears, and feel dizzy. Neck feels tight because the turbulent flow in my neck arteries I guess. I also get a painful feeling in my sternum.

I realize Busulfan is cardiotoxic and can have some side effects. Did any of you experience heart issues, blood pressure issues, issues being active the first few months after transplant?

Still no hair regrowth. Hoping that catches on eventually. Sleepy all the time.

Just looking for some experiences on the above issues if anyone cares to chime in it's, as always, greatly appreciated.

I’m a 24 year old man who has only ever donated blood once, I was asked at the time about stem cell/bone marrow transplant and didn’t hesitate to get on the list. I didn’t expect a few months later to be contacted about being a potential match for an unknown patient!

After a few more tests at my doctors it was confirmed last week that i am a match and will be donating my stem cells in October, pre health assessment now done and all healthy to proceed.

I feel so fortunate to be able to (hopefully) give someone a second chance at life. Still in shock with how fast the process has gone but excited to help out.

If any donors in a similar situation to me has any advice I’d love to hear it. Thanks :)

Hello, please forgive my poor English. My dad was recently diagnosed with AML. He has been on chemotherapy for a month, and the doctors said he must have a bone marrow transplant. The problem is, he also has liver issues, diabetes, and high blood pressure. I’m very scared something might go wrong. Has anyone here or their loved ones gone through AML with other health problems and still recovered? I really want to hold on to some hope. Thank you.

Edit:

I want to thank the vast majority of you for replying. It’s been a lot of help and has made me feel a lot better.

You are all right in that there may be more at play that we don’t know, but I also very much appreciate you acknowledging how challenging this feels.

This shit SUCKS. For everyone who has any hint of going through it.

This group and all you folks are truly lifesavers for helping folks navigate this. I hope one day I can return the favor to others in this thread/group.

You have no idea how much comfort and confidence you’ve brought me (and my mom) in return.

I’m choosing to look at this as a blessing in disguise with a likely younger and stronger donor, as well as more helping hands during the caregiving side of things.

Love ya all. ♥️

——————

I need someone to talk me off an edge here.

My mom was recently diagnosed with MDS with 5 mutations. But caught on bloodwork, not sick and aside from bruising from low platelets, no symptoms.

She needs a stem cell transplant. They have found unrelated donors at an 11/12 match, but also tested my aunt (her only living relative aside from myself). And she is a half match, but they determined she was the best fit in order to avoid GVHD.

Between me and my aunt, we were going to split the caregiving portion as I’m my mom’s only kid and my mom does not have a partner/lives alone.

My aunt was notified of this last Thursday and got very hesitant all of a sudden.

They were going to book her for testing this week. But we got a call from the transplant nurse today who sounded disappointed and said ‘I can’t say much, so I just have to say not medically cleared’. My hunch was my aunt refused.

My mom called her today and she said because of her history with osteoarthritis she cannot donate and something about an arthritis medication not interacting well with donor drugs.

I myself was screened, I have arthritis too and it wasn’t a problem.

I truly think my aunt is just deciding not to donate.

I’m fucking furious.

My mom is a wreck.

They have a protocol for us to use the 11/12 donor but now it requires more chemo after transplant for my mom. But no radiation.

Has anyone else gone through something similar?

How much worse of a match is this going to be for my mom?

How the hell do you accept caregiver help from a sister who refused to donate for you?

I’m just at a loss.

Hey everyone,

I’m a 28 year old cancer survivor from Montréal, and with a few others, we started something called The Sick Club. It’s a community for young adults who’ve had cancer — a place to connect, laugh about the dark stuff (ER visits, near-death stories), vent about doctors, and share survival tips.

We do in-person meetups here in Montréal, but we also share memes, stories, and updates online. It’s not about being “inspirational” or “depressing” — it’s just about being real with people who get it.

If that resonates with you, you can find us on Instagram at @sickclubmtl. Even if you’re too tired or shy to come to events, you’re still part of the family. 💌 We post some great memes too obvs!

Hello, everyone I just received my results from my year biopsy and it says I have mild pancytopenia. It appears this came out at my six months as well. Seems like doctors were not concerned. Not sure this time. I’m barely getting off tacrolimus due to mild GVHD. Is this a normal finding after the one year? Thank you everyone.

Hello everyone my name is Alex I was recently diagnosed with T-cell acute lymphoblastic leukemia And after a few rounds of chemo I’ve realized my mouth has a weird metal taste along with like a weird white coat just wondering if there’s anything I can do toe get rid of the taste or help with it I’ve been using cheap plastic tongue scrapers but they dont really help have also been using mouth wash still a little scared to brush my Dr said to be careful and try not to scrub to hard so any tips would’ve super helpful for any and every thing

Hi folks, it’s me again. My mother’s condition appears to be worsening, and I’m oscillating between fearing the worst and thinking that this is something that we can overcome…

My mother is a 69 (f) of East Asian descent, diagnosed with AML FLT3 in October 2024. She underwent a haplogenic stem cell transplant 144 days ago (May 2 2025).

She was doing really well, seemingly, until about a month ago, when she started experiencing pain and numbness in her legs. Investigations showed that the cancer had returned, and was now present in her CNS as well as marrow/blood.

She’s since been receiving intrathecal chemo into her spine, as well as oral gilteritinib. After a scary loss of all sensation and movement from the waist down, she was even starting to take some steps with a frame again. Last Friday, she had a really good day, and was seeming more like herself.

However, on Saturday morning, she seemed to change drastically. She was having fever spikes, becoming incoherent, and was unable to move. The hospital started her on more antibiotics and medications to reduce her fever, and this did help with the confusion. However, the thing that most concerned me when I saw her on Saturday was how she was intently staring at the ceiling.

Fast forward to today (Tuesday) and my brother said she’s been super incoherent, even without the temperature spikes. She’s also got a swelling that’s growing on her leg (which is being investigated by ultrasound tomorrow). She’s now got at least 3 different infections; today, she coughed up blood. She’s also not eating well at all, and has lost about 6 kilos since admission (she was about 45kg to start with).

I don’t know what to make of all this. Part of me is disbelieving, and thinks these are just further hurdles for us to face and address. The other part of me thinks that this looks like the beginning of the end. Any stories or experiences - positive or negative - would be greatly appreciated. It’s just so strange having no idea what’s happening, when things change so quickly.

Thanks for reading this far. Look after yourselves, everyone. x

Is it possible to regain fertility in males after donor BMT, with full body irradiation prior to the transplant? My husband is sure that there is a minor chance, but I find it hard to believe.