r/leukemia

^ I originally posted this on the day I started induction chemo (7+3 with the red devil)

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TL;DR - 1 year since diagnosis and I don't know when I'll truly come to terms with treatment and transplant.

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Today marks exactly 1 year since I first heard the words "you have leukemia". I was in the ER triage room all alone, and heard it from a doctor surrounded by a bunch of residents after I had been poked multiple times over by phlebotomists who wouldn't listen to my pleas for a vein finder/ultrasound. They blew two veins before success, and even that was a struggle. I still have the bruises in both forearms all this time later.

The shock threw me into a panic attack. They finally let my mom and best friend back into the room, as they had accompanied me there. The doctor then told me I was being admitted and was going upstairs. I got up to walk and was immediately shut down and required to be pushed in a wheelchair the entire way.

That was the moment - the before and after moment. Being wheeled through the under belly of the ER, down a long hallway filled with dialysis patients, to a patient elevator I would come to know very intimately. I knew this signified a loss of control, but every new piece of information I would get that night and the following days just buried me deeper.

I met with the head of the Haematology/Oncology program and his PA. The news was heavy - you have leukemia, you're going to receive chemotherapy, and there's no telling how long you'll be here. Still in disbelief of all of this, I asked what happens if I don't pursue treatment. I received a simple two word answer: "You die."

I had so many plans for that summer: It was memorial day weekend, two weeks from then I was supposed to be joining my family for our first group vacation in almost a decade to Canada. I had tickets for a music festival in Vegas a few months later, and a 2 week trip to Japan planned with the man I was finally making things official with after 6 years of will they/won't they. But now I was being told travel is out of the question.

Then came the dietary restrictions; I asked if I could eat sushi. Nope, absolutely not. That's when the tears started. It felt silly, and still does, but the scope of my loss of control and autonomy just kept expanding. In one week I had gone from feeling like life was finally coming together to my entire world falling apart.

That next morning was my first bone marrow biospy to confirm the disease and mutation. From the beginning we knew I was headed for a transplant.

During induction I developed a stomach ulcer, which stole my appetite and caused me so much pain while it took 5 days to determine what it was. Then finally, after the uncertainty of 5 weeks, 2 bone marrow biopsies and complete hair loss later, I was told I was MRD- and could go home for a week before needing to return for my first of two rounds of consolidation. 1 week to be back in my own bed. 1 week to make up all that missed time with my cat. 1 week to pretend I'm not sick.

I had missed family travel, my best friend's birthday, and lost out on a career that was just beginning. But I was alive.

I went back for my first round of consolidation and missed another holiday with friends and family: fourth of July. I suppose lucky for me the BMT unit is on the top floor of the hospital, so affectionately referred to as the penthouse, and I could see fireworks for miles all around me.

My next round of consolidation was set for a month later. I got to go home and enjoy my freedom for another short while. But it ended up being even shorter ... I developed an infection in my pelvic region. The pain was unbearable and I wasn't allowed Tylenol because my counts were so low. I waited 4 days before finally agreeing to go to the ER, I knew what it would mean to show up there - another admittance. This was by far my worst hospital experience through it all, but that's a story for another time. The medical trauma from just that 5 day stay could be a post of its own.

I got another week at home before being admitted for my next round. I was getting to be a pro.. blood draws were at midnight, so by the time I was opening my eyes around 5am, I'd check my chart and know blood and platelets were coming. I knew the room service menu inside and out and had my regular orders. I brought comforts from home: my own clothing, my own pillow and blankets, photos of my cats, my Roku for streaming. I built a schedule to have some semblance of normalcy: ordering breakfast as soon as I woke, showering before lunch, walking no less than 3 times a day settling in with a show for bedtime.

When my second round was done, I knew the next hurdle was transplant. I had remained MRD- since induction and was fortunate to have three 10/10 matches on the registry. The first individual my team contacted agreed and I will forever be grateful for his generosity to give.

Throughout the entirety of my treatment every nurse, doctor, specialist, and patient testimony warned me how brutal transplant was going to be, from the pre-tests, to the Hickman line placement; from the conditioning chemo to the preventative IV meds. I'd lose my appetite, struggle with basic tasks, develop mucositis, and be admitted for an undetermined amount of time. I fought hard, through pain and low appetite, I forced myself to stay active and keep my established routine. I was determined to get out of that hospital as quickly as I'd be allowed.

That feeling of losing my freedom was suffocating. A 12 by 12 room and a single hallway was all the space I was allotted. I wasn't sure how long I would maintain my sanity. I'd already had a panic attack during the transfusion.. each day my mental health was chipped away at. I craved fresh air, sunshine. Day +17, it was a rainy Monday in early October, and I finally received my discharge papers.

I wasn't going home though. My mother as my caretaker and I as the reluctant patient moved across the street from the hospital in the provided recovery housing. The physical space opened up, but I still felt trapped. The restrictions were intense and if I wanted to survive, I needed to follow them. No going outside within 24 hours of rain, wear a mask wherever you go and avoid the public as much as possible, keep the dietary restrictions, be at the hospital every day, and no chance of going home until at least day +100.

Numbers progressed, bone marrow biopsy results were clear, chimerism numbers were trending in the right direction. The anticipation to go home was overwhelming. Due to my LFTs doing a fun rollercoaster ride, I wasn't released to go home until day +129. Would my cat even remember me?

I have now been home for 4 months. My cat is on my lap every chance he gets. My hair has finally begun growing back in. Doctors visits have decreased some, but are still happening multiple times a week. I still can't work. I still can't travel. I still bear this Hickman central line. But I'm alive. I'm officially in remission. My chimerism is at 100% and my blood says I'm a man (lol).

Despite all this, and all the details not included in this post, it doesn't feel real. I feel I dissociated too strongly that it was like watching a stranger undergo this life altering diagnosis and subsequent treatment. Being stuck in limbo doesn't help, and the state of the world makes it even more daunting. Most days I want to fast forward to put it so far in my past or rewind and find a different timeline.

I know how truly lucky I am, and I don't want to be ungrateful. I'm sure I'm not entirely alone in these feelings, but even rereading what I've typed seems like a distant story I didn't truly experience and will forever struggle to claim as my own.

My boyfriend (25M) had cancer in 2022. It was APL (APML) and he went through around 8 - 9 months of treatment, he is currently under Maintainance. I’m 25F, and we started dating in 2021.

When he was first diagnosed, it was devastating. Even my mother (F50) — who still doesn’t know we’re dating — cried for him. During the second month of his treatment, my boyfriend got emotional and said something along the lines of “Who’s even going to marry me now?” I tried to lighten the mood and joked that I would marry him.

Later, while talking to my mom about him (I used to tell her everything about him without revealing we were together), I mentioned that conversation. Her reaction shocked me. She said I could never marry him because he had cancer, and “what if I become a widow?” We argued badly and didn’t speak for 2 days. Eventually she called me and said that arguments don’t change the fact that I’m her daughter. We live in India.

A year later, in 2023, I brought it up again and asked her directly why it was wrong to marry someone who had cancer. She said my boyfriend is perfect in every other way — kind, from a good family, well-mannered — but she would never agree to the marriage only because he had cancer. According to her, what if the cancer comes back when we’re older and I become a widow at 35 or 40? She said she doesn’t want that life for me.

I told my boyfriend what she said, and he was genuinely hurt and surprised because he never expected my mother to think like that.

Despite all this, we stayed together and recently celebrated our 5-year anniversary. My brother thinks we’ve only been dating for 2 years, but he genuinely likes my boyfriend. My father has spoken to him on two occasions and my mother also talks to him whenever I hand over the phone. Ironically, my parents still don’t know we’re actually together.

I’ve reassured my boyfriend many times that I do want a future with him. But I’m terrified that when I finally tell my parents I want to marry him, they’ll openly tell him the real reason they disapprove — that he had cancer — and that it’ll hurt him so deeply that he’ll leave me. And losing him would mean losing someone I’ve known for over 10 years. We were schoolmates before we ever dated.

Last year, our families even met because my parents invited his family out for a meal since I used to spend so much time at their house during college.

I feel stuck between the person I love and the fear of how my parents will handle this. I don’t know how to make them understand that my Boyfriend is amazing towards me without using the term “love” because my parents are very practical and logical.

Hello Ive never really used reddit before and I'm kinda nervous getting to have my post out in the open

But I got diagnosed at august of 2025 and I avoided chemo until recently (big mistake i know I regret it I faced the consequences) I'm currently about to start my 4th session and I was looking forward to hearing other people's stories with a type like mine

Feel free to ask questions

Hi everyone,

I’m 24 years old and the primary caregiver for my mother (48F). She is currently battling relapsed AML (FLT3-ITD, NPM1, and IDH2 mutated). She is admitted at a semi-private/charitable hospital here in Bangalore, India, undergoing salvage therapy (Venetoclax + Azacitidine + Gilteritinib).

Clinically, she is fighting hard. Her peripheral blasts have crashed, but she is heavily reliant on the blood bank while we wait for her marrow to recover. Once she hits remission, the immediate next step is an Allogeneic Stem Cell Transplant (we are incredibly lucky to have a 12/12 fully matched sibling).

Here is why I am posting: We have no health insurance, and we are hitting a massive financial wall.

Between the imported targeted drugs (like Xospata/Gilteritinib) and the upcoming BMT, our estimated total cost is hovering around ₹25 to ₹30 Lakhs (roughly $30,000 to $35,000 USD).

In India, this creates a brutal "middle-class trap." We don't qualify for government poverty schemes or hospital BPL (Below Poverty Line) quotas. I am managing the medical decisions and daily blood donors, but figuring out how to bridge this financial gap is terrifying.

I am looking for genuine, practical survival advice from anyone who has navigated a massive cancer bill without a safety net, especially those in India or similar healthcare systems.

Managing this marathon at 24 is overwhelming. Any advice, resources, or hard truths on how to financially survive this would be deeply appreciated. Thank you.

hello , my husband just got first sct failure after 11 months post transplant . The dr said it might happened because he went to the transplant with mrd 0,01 cells . Is there any successful stories for the 2 transplant ? thank you

I have had Acute Lymphoblastic leukemia three times since I was 14 years old, and now I am 22 years old, and I have had a BMT from my sister on July 1st, 2025 (She was a 100% match). The thing that I am struggling with right now is GVHD in the mouth and skin. It's very mild, but it's still very overwhelming for me because I feel like I can't get a break in life, and I'm just so tired. I know it's not to the extent of what other people are going through, but I don't know how to control my emotions with it. I want it to go away. I want to live a smooth life again. I don't remember the last time I had no problems in life. Sometimes I don't want to keep going, but I know that's not an option, and I am very lucky to be alive. I don't know what I am looking for here, but I guess I need somewhere to vent.

Okay this feels a little vulnerable to post because obviously it’s peanuts compared to actually getting through treatment, but I’m curious about others’ experiences so please be gentle.

You may have seen my post on Tuesday that I rang the bell! I’m officially on the way to the rest + rebuilding of my life after 3.5 years of ALL treatment.

That being said… steroids + chemo + foot drop + neuropathy absolutely wrecked my metabolism/body composition and I’ve gained around 30–40 lbs since diagnosis. I go to the gym 3–5x a week, lift, do cardio, eat pretty clean, and I still cannot get the scale to budge. I also just plain out hate what I see in the mirror right now.

Has anyone here had success with GLP-1s (Reta, Wegovy, Ozempic, Zepbound, etc) after treatment? Or did you find it became easier to lose weight naturally once treatment fully ended and your body normalized a bit?

My oncologist technically approved it, but wants my PCP to manage it if I decide to go that route as I transition back into “normal life.”

Would genuinely love to hear others’ experiences if you have any.

Hello all, I am new to the group and have been recently diagnosed with AML and CML. I was wondering if it would be ok to post my go fund me to see if anyone is willing to help. Please let me know if allowed or not. God bless you all. Thank you.

Hi all Im a 51y male from Bangalore, India. I was diagnosed with AML in 2024 with (TP 53) high risk mutation.

I underwent 2 rounds of 7+3 induction and re induction to achieve mrd-ve and then had the most exhaustive and testing consolidation myloablation (bisulfan+cyclophosphamide) I read now that this is as vigorous as it can get. Following this i had SCT. Im 2 years past the SCT and in Remission by Gods grace.

While I was undergoing my treatment, someone who was known to me got diagnosed with AML (tp 53) who unfortunately didnt make it.

2 days ago, my best friends wife was Diagonesd with AML and the investigations are underway.

My interaction with the AML cases this far all suggest to an increasing trend of rising AML cases here in India. We all share a common concensus that the Covid shots has a lot to do with this now, since this deadly disease is so much on the rise that it gives me jitters.

Does anyone else share the same viewpoints? Your comments and thoughts are much needed and will help in better clarity.

First things first, it's an early diagnosis, but the lab results seem highly suggestive of a leukemia/lymphoma variant. I want to write to arrange my thoughts, and if possible, share experiences and get words of support.

Second, I feel fine physically, and better mentally right now.

I'm a 37-year-old doctor, not in the US. My main specialty is cardiac anesthesiology. I work in one of the biggest government hospitals in the country. My workplace has a rule that a smidgen of a salary raise depends on whether we get a health check-up or not, so everyone gets a blood test every year.

This year, I'm actually in very good health. I started doing Pilates a year ago and felt the best ever. I aimed to get good lab results to buy good health insurance. However, my CBC in January showed mild thrombocytopenia (around 120, last year it was 180).

Initially, I did not mind it much. It can be a temporary drop in infection, except I thought now I can't submit these labs to the insurance company. Maybe next year.

I also always have very thin skin. Even when my platelets are 300-400, I get petechiae easily from a scratch. But one day, I noticed very small petechiae on my forearms and jokingly showed it to my junior, showing her how thin my skin is, and told her my last platelet count was 120.

She insisted I do the blood test again, very insistent until I relented (and I will forever be grateful to her). So I redid my CBC again. This time, my platelet count was 100k. Whelp. I consulted the hematologist. Initially, we agreed I might have early SLE or ITP. The age range is typically not the leukemia age range.

My ANA is negative, then the follow-up lab started to show mild anemia (32-35), which I never had before, and an increase in monocytes in the automated CBC.

I'm an Asian doctor, who can work a grueling schedule of 60-90 hours a week, so at first, the hematologist still suspected it could be underproduction from lack of sleep. However, the bone marrow biopsy started be a suggestion. I was the one who postponed it due to my very conflicted schedule. The CBC stayed roughly the same for four months, until earlier this month, when my CBC showed a few metamyelocytes and atypical lymphocytes.

As a doctor who is not a hematologist and works in an operating room, I'll tell you I last heard about metamyelocytes is 18 years ago 😂. My monocyte count has reached 2600. My ANC is 1300. I have (mild) pancytopenia.

Now we're getting serious, and everything is moving fast. I had a bone marrow biopsy, NGS, and flow cytometry. Lots of tests I'm not familiar with. With high monocytes, the initial likely diagnosis is CMML, which is 1) atypical for my age but possible, and 2) compared to other types of leukemia, has a poor prognosis and no targeted therapy except for some rare subtypes.

I cried for a week, waiting in a limbo of the worst possible outcome. I started lingering in these subs, and I do think everyone here has very good knowledge, much better than mine. I have to say you all here are amazing to even have the courage to share your experience, good or bad. It means a lot that while everybody's experience is different, you are not alone.

Last week, the lab that ran my blood cytometry for the acute leukemia panel notified that the flow suggested decreased monocytes but increased B lymphocytes, and asked to further do the non-Hodgkin lymphoma panel.

Today, the cytometry suggests hairy cell leukemia, a rare type that correlates with the clinical picture. The initially increased monocytes were an automated CBC error. (My country lacks technicians to really look into individual blood smears, and sometimes it's easier to just send the advanced test.) The markers override the CBC. There are still other possible types I could have, but mostly still better than I thought. Anesthesiologists are usually trained to be pessimistic and expected the worst outcome.

I currently feel a lot better. After a lot of consideration, I realized I have a good standing. Accidentally finds while healthy, with no B-symptoms. My diagnosis was much faster than for other people who are not healthcare workers. It can take years of you start from abnormal health check up.

I still need further tests to determine the exact type, progression, etc. But I have a start now, and I do feel better than being in limbo yesterday.

I do know it will be bad again, but right now I want to record that I'm hopeful. This is the beginning of my journey as a patient (I have never been admitted due to sickness in my life, which is surreal that I will be a patient for THIS).

Thank you for reading. Hope today you have a good day.

Today, after 1,231 days, countless days at the cancer center and nights in the hospital, I got my last dose of vinctristine 🥲🥲🥲 and am officially done with infusions. We all go to hell and back on this journey, and I know for me it definitely felt insurmountable (especially in the beginning). But I’m here 3.5 years later to say it was worth it and I can’t wait to see what life looks like on the other side.

Sending love and the most positive vibes to everyone. This group has been such a gift to me. I’m always here if anyone needs someone to talk to or commiserate with.

Hi, looking to get some reassurance or just bounce ideas...

My brother has ALL b cell ph-, had CAR-T and then a SCT in October. He did great thru his transplant, built blood and platelets easily.

He usually runs about 200k platelets now and was getting some routine bloodwork after spotting some petechiae and his platelets have dropped to 17k out of nowhere. We are 7 months post transplant. He's off tacro.

His last bloodwork was April 20th and everything was normal.

The only thing that has dropped are his platelets, wbc rbc and hemoglobin are all in normal healthy ranges, its just the platelets that dropped. Oh and his liver enzymes are elevated as well but bilirubin is normal.

He talked to his team and they don't seem overly excited, they scheduled more bloodwork for Friday and will be scheduling a biopsy pending those results.

We are obviously shaken.

The only thing that has happened recently is he went thru a small cold like virus like 3 weeks ago.

Sorry if this is all over the place or worded wrong, my head is swimming tonight.

Just looking for some reassurance or I don't know. Any input appreciated :)

My father (73) has gone through a Stem cell Transplant. we are almost 1 year out and he is doing terrible... he has lost over 40 lbs since the start, has zero muscle mass left, has terrible tremors, and zero cardio vascular to get up and walk around. He was recently admitted into the hospital because he has been saying things like "im not gonna make it" so we were hoping they would find something, but after all tests he is "healthier" than when we went in for the procedure. I feel like since they have completed the process they have washed their hands of him... I cant get him up to do anything, he sleeps all day, refusing to eat or take meds... any advice would be greatly appreciated, im not ready to loose my dad yet.

My brother 's mds has become AML with many high risk mutations post sct 9 months.When he relpased with 10% blast on marrow he was given DLI with aza ven and later he was given second dose of DLI but he had 25 % blast in blood after that. So his relapse was full blown.

Currently he is being given a regime containing clad+ etoposide+ cyclophosphemide. Which might have chance to control the disease.

I want to know can his second sct be avoided, our Dr is saying to for haplo with father (55 age) . We don't have time to look into registery. Can DLI or any other things cure him id disease burden become very less with this regime

My sister 33F was diagnosed with CBF-AML t(8;21) with a KIT mutation in November 2025. Since then, her leukemia has responded very well to treatment, but she went into Haplo Allo Transplant (I was the donor) with MRD positivity at 0.375%. Now, at her 30 day biopsy she has 0.07% MRD Positivity remaining. We were obviously praying for her to be in full remission. It’s my first time ever posting on Reddit or on any kind of community board or outreach group for caregivers or patients going through this, but I selfishly and desperately need hope we can get through this. Please be kind, thank you so so much.

Hello everyone, I am just making this post in hope to get other peoples experience in dealing with a CMV reactivation after having a BMT.

Long story short, about 7 months post BMT had CMV detected in bloodwork, viral load was about 30,000, docs called and said to go on Valganciclovir 900mg twice a day. Have now been on the med and dose for 4 weeks and viral load is under 200 for a couple of weeks now. I am just wondering what other people’s experience has been with Valganciclovir as it’s now starting to affect the blood work, counts are trending downwards. Doc just keeping an eye on everything, from what I have read this can definitely happen after being on the medication at a high dose for a while.

If you have any experience with Valganciclovir and CMV would love to hear your story, thank you so much for your input.

My dad has an IDH2 AML mutation and is currently in remission after two rounds of chemo. The first round didn’t work but the second round used drugs that were targeted for his particular mutation and that thankfully got him into remission. We had a rough time to get there as he ended up with CDiff and was in the ITU after his first failed round. He’s been home for a month which has been lovely.

We went for a meeting to discuss a BMT that he is scheduled to have next month. They basically said to him that if he doesn’t have the transplant the cancer will come back within 6-12 months which was hard to hear. They communicated the usual stats including 1 in 6 don’t make it through the BMT which again was hard to hear.

We couldn’t find a full match on the registers so my sister is donating and is a half match. The doctor was positive that the cocktail of drugs they will give him will be as if a full match was given which was comforting.

It was a pretty grim meeting and I know they have to communicate all the risks for the consent forms to be signed but I just feel so deflated. We’ve had a lovely time at home with him and it’s as if he was never ill. Knowing this big transplant is coming with so many risks is so deflating. I just don’t know how I’m going to make it though the next month with transplant and recovery but I know I have to be strong for him.

I just don’t know how to feel and to be honest I’m just scared this will go south :(

Hey friends,

I’m (31M) reaching out for insights and experiences of others. On April 29th, 2026 I was diagnosed with B-ALL which came as a shock to say the least. I’m on day 15 of induction chemotherapy getting dumped with vinchristine, methotrexate and all the other fun drugs. They cleared my CNS of any blast cells about 5 days ago so now it’s only lumbar puncture once a week. My hair started thinning a couple days ago but I wanted to get ahead of it and shaved my head myself. I’m waiting for the results of the bone-marrow biopsy but I was curious how others are finding the journey? I’ve been advised that my stem cell donor is looking more and more like an option down the road.

I’m pretty optimistic that I can work through this but I wanted to know how some of your lives have changed post-initial chemotherapy and what were some ways you stayed in the fight? I know I’m early in my treatment plan and everyone’s path is different, but I’m hoping for some support in managing expectations as I go.

I’m putting faith in the medical team I have here in Ontario and can’t shake my mindset of “I’m going to beat this”.

Thank you, stay strong

Hey everyone. Today I finally decided to start a project I’ve been thinking about for a while. I honestly don’t know where it’ll end up or how far it can go, but I want to try.

The project is called OpenLeukemia and my goal is to build it in the open and slowly improve it over time. Maybe one step at a time it can become something useful for people affected by leukemia.

I also want to use Reddit almost like a dev blog and post updates progress, ideas, failed experiments, random thoughts, and improvements along the way.

If you’re a developer or just someone who likes contributing to meaningful projects, I’d love feedback or support. Maybe someone out there will want to join and help build this together. Let’s see where this goes.

Hi all! 42F (mother of 4 ages 19,17,14,11) diagnosed with B-ALL on the 27th after going to the ER for back pain the night before.

Started on Prednisone and did the first LP right away. I started Ponatanib 30mg on May 1st. I started a half dose of Blina May 4th and had mile side effects (fever, rash, body aches/pain). They bumped the dose a week later and side effects returned and became worse. It settled down after a few days but then my AST, ALR, and AP went through the roof. Blina and Ponatanib were paused and they started Dexamethasone. After a few days enzymes were down enough to restart Ponatanib at 15mg. I've had two doses but am starting to notice side effects like headache and loss of appetite.

More genetic tests came back during this, and I saw a new doctor, and now the prognosis isn't great. They are concerned I won't respond to treatment. I can post the exact things later but right now I'm too bummed out and overwhelmed. Still waiting on more genetic results.

The new doctor is wanting to wait four weeks to restart Blina, but that will push everything out. I'm anxious to get back on Blina but nervous about side effects coming back and my liver not tolerating it.

I'm not sure what I'm looking for in posting this. I would love to hear more stories and experiences with this regimen, especially side effects and what happened if issues arose.

I want to stick around as long as possible to raise my kids. Their dad is a bum and one doesn't see him at all. I've remained positive so far, but the disappointing genetic results and pause in treatment are really impacting me now. I'm still getting on the treadmill each day, eating healthy, working remote, visiting with friends each day, and trying to do anything I have control over to fight this, but I can't change my genes.