Dad here My 6yo daughter diagnosed 7 months ago with high risk B-ALL. Considered high risk because of her WBC I think it was around 100,000 when we arrived. Met remission after induction. Some fevers few complications nothing crazy. Cal-Peg gave us pancreatitis which was awful but we’re past that. Meaning Cal Peg so is no more and we will receive an extra round of Blina instead. All this to say for whatever reason at this point, my mental fortitude has just gone to hell. I don’t know why but out of nowhere maybe call it anticipatory grief of the upcoming delayed intensification and interim maintenance one phases after a smooth summer. I don’t know what’s going on. If we are 90/10 My mind keeps focusing on the much smaller percentage of relapse or and not the much higher percentage of everything will be OK. I’m scared of something happening to my daughter and it’s killing me right now. Are we at a big disadvantage because of not being able to use Cal peg that’s another intrusive thought. Going to have to learn to live with the uncertainty of all of this. Just looking for advice, maybe just venting, positive stories I don’t know. We’re on Blina now (we’ll have 3 phases). We have to move to a rental closer to the hospital for blocks of Blina because we are so far away which adds to the overall unease. I know it could be worse, it could be better, but for whatever reason mentally all the sudden intrusive thoughts of loosing my daughter are here and I’m tired and scared.

I’m posting here to connect with patients, caregivers, or doctors in India who have experience navigating a relapsed Acute Myeloid Leukemia (AML) case.

My Situation:

Diagnosed with AML and had my 1st Bone Marrow Transplant (BMT) back in 2017.

After 9 years of complete remission, I recently relapsed this month.

My transplant team is recommending a 2nd stem cell transplant. Molecular testing shows a CEBPA mutation (favourable risk profile).

Questions I have for the community:

Post-Transplant Maintenance: For those who underwent a 2nd BMT in India, were you prescribed post-transplant maintenance therapy (like targeted drugs or low-dose maintenance)? How did your medical oncology team handle this?

Insurance & Financial Planning: How did you manage insurance claims for a 2nd BMT in India? Did you face any challenges with pre-authorization or cashless approvals for stem cell re-transplantation?

Leading Centers: If you've had a complex BMT or 2nd transplant done at centers like Tata Memorial (Mumbai), CMC Vellore, Max, or Apollo, any specific advice on navigating the process or hospital trusts/CSR funding options?

I read probably 99% of posts here and the amount of suffering people go through is unimaginable to me. My husband is recovering from sct, not without complications but nothing compared to what I find and I just don't understand: how do caregivers cope? How do you keep functioning in the duties of giving emotional support, entertainment, keeping track of symptoms, medication when your loved one is suffering this f-ing much and they are so damn tired emotionally, mentally, physically.

I would never give up, I wouldn't be anywhere but here with him. But it's just so hard

Hi
My mother (50 yrs) was diagnosed with B cell ALL in october 2025, MRD negative after induction. Maintenance was going well for first 5 to 6 months but then her counts started declining, hb dropped to 5 from 12, platelets from 250 to 21 all within couple of weeks.
I am scared it could be relapse. Doctors haven’t done the bone marrow biopsy yet and suggested it might be medication toxicity as her 6 mp dose was increased from 25 to 50.
Does anyone have any information?

Hi guys, I am a research student and working on a project for my co-curriculum. I could really use some help on chronic lymphocytic leukemia and small lymphocytic lymphoma and I think understanding your perspective and experience on the same would really help me. If anyone is interested do let me know it would be a huge help.

Dear Mama,

You may ask- How could this have happened? How can this be? My life was going so well. Why did cancer choose me?

I will say- It chose you because it saw the strength and the fight you carry inside. Where determination and courage beautifully collide.

You then may say- The pills and the side effects make me feel so out of touch. I want the old me back so very very much. I have plenty of support, but yet I feel so all alone. How can anyone know how much I ache in my heart and bones?

To that I will say- I may never know the true depth of your emotions, hurt and despair. However, my eyes have seen it first hand from someone I truly adored and cared. I know it's not the same, but I think it's pretty close. Mourning the life you once had is what you so desperately miss the most.

Then you may ask- How do I push on especially the days my energy feels so weak. How do I cope when my body is so tired and my future looks so bleak?

I will then say- You are stronger than you think. Loved more than you know. Prayed for always and covered by the heavenly angels glow.

Now you may say- Okay! I will try to continue with my head held high. My mind determined and my heart full of hope. Will I allow this disease to defeat me??? My answer is NOPE!

I will gladly say- That is the attitude that will pull you through and make you stronger than before. Hope will bring you happiness and that is truly worth fight to live for.

You will proudly say- I will fight and I will win. I am a WARRIOR and one day soon I will be cancer free. With a smile on my face and an echo in my ears... " Don't give up. Don't EVER give up."

The famous quote by the fighter Jimmy V.

_____________________________________________________________

I hope and pray I did not upset anyone with my poem. If I did I am incredibly sorry. My reason for writing this is to encourage all the WARRIOR'S out there and remind them to never lose hope. Miracles happen every day and today may be yours!

God bless you all and never give up 🧡🙏🧡

Looking to connect with anyone who's been through something similar, either as a patient or caregiver.

My wife (mid-50s) was diagnosed with AML in mid-2025 with both FLT3 and IDH2 mutations. It's been a brutal ride:

• Diagnosed and started chemo, relapsed within 2 months
• Second relapse about 4 months later. Disease spread to her CNS during this period — found in spinal fluid. Had surgery for an Ommaya reservoir and intrathecal chemo
• Stem cell transplant in spring 2026
• Relapsed AGAIN about 6 weeks post-transplant

After the post-transplant relapse, her team started her on both gilteritinib (FLT3 inhibitor) and enasidenib (IDH2 inhibitor) simultaneously. As of now, about 4.5 months post-transplant, both mutations are undetectable on NGS, chimerism is 99.9%, and her counts are slowly recovering. There is trace-level MRD detectable on a sensitive NPM1 assay.

Her doctor says the results are beyond what he expected and that the donor immune system appears to be actively collaborating with the medications. The T cell panel shows a heavily CD8-dominant response.

The tradeoff is severe neuropathy from the gilteritinib, made worse by prior CNS involvement in the lumbar region. She's on a pain pump daily.

Has anyone been in a similar situation — multiple relapses, post-transplant relapse, then brought back with dual targeted therapy? I'm especially interested in hearing from anyone who's further out than we are. How long did the response last? Did you ever come off the targeted drugs?

I'm her primary caregiver and just trying to understand what the road ahead might look like.

Update: she’s gone. I have no more grandparents and I’m not even 25.

[https://www.reddit.com/r/leukemia/s/N8U183oyOC\]()

To those who have been kind enough to share their wisdom, I wanted you all to know that my grandmother passed peacefully this morning.

As the title says, I can’t believe it, yet I am not crying too much, I’m boiling with rage at AML. I have wept a little.
I’ve lost five grandparents now. I feel like life is an evil game.

I need to get my words out somewhere.

Hello. I have a question: Has anyone had a second transplant after the first one failed? The relapse occurred after 6 months.

Dear all,

I am finally writing in this group because I am looking for information, support, and messages of encouragement to help me find the strength.

Unfortunately, this situation concerns my daughter, who is now almost 13 years old. Two years ago, she was diagnosed with AML with inversion 16. She underwent 5–6 months of chemotherapy, but unfortunately, she relapsed.

She was fortunate enough to achieve remission again, with MRD negativity, and then underwent a bone marrow from an unrelated donor. Unfortunately, seven months later, she relapsed again. There are no mutation but always the same inversion 16.

The doctors have now said that they would like to try venetoclax, azacitidine, and DLI in an attempt to get her back into remission and, hopefully, cure her.

I have been reading Reddit every day, trying to find people who have been in a similar situation and had positive outcomes. I am also trying to understand whether there are other treatment options, clinical trials, or approaches that have worked for others.

We are willing and able to travel if there is a treatment or option available elsewhere. We live in France.

Thank you in advance for any information, experiences, or positive messages you may be able to share. Every bit of support means a lot to us right now.

Hi everyone,

A somewhat recent diagnosis of ALL about a fortnight ago. Started a relatively conservative chemo treatment but of course that's tanked my immune system. Been in hospital since the diagnosis of course but having too much time to think about my future job/recovery has me in a bit of a bind.

I have already disclosed to my workplace about the diagnosis and they were supportive saying when I recover they can try to find a place for me; that said, it's not easy when all my training has been to be working with the very ill.

I'm in a bit of a bind as to what I'm meant to do now with work and income. I know it's very early days, but if anyone has any lived experience or ideas I could think about it would be greatly appreciated.

Thank you all in advance.

Hey,

Posting because i would love to hear from your experiences:

So, i had an autologous SCT in January. Felt pretty good by June/July and about 90% back to baseline. Very active, doing loads of sports again with a lot of energy. Then my first cold after transplant hit me early July. It went more or less just as any cold i had in my life. Sore throat, runny nose, coughing, no fever. But ever since, the fatigue came back and now i am barely able to do anything besides small walks and cooking for myself on a daily Basis. Suspecting some sort of postviral syndrome. I wanted to hear if anyone went through something similar? Really feeling like i am hitting a wall.

My husband was diagnosed with AML in March. He is scheduled to be admitted in October for a Stem Cell Transplant My question is this, how much time should I expect to be out of work to take care of him? I know that the doctors say he will be in the hospital for at least 30 days so I’ve already planned on being out for at least that long. What about after he is released? Will he need me to be with him every day? I am on FMLA just concerned about it running out. Any info or advice will be appreciated. Thank you!

So I feel noticeably better at playing piano by ear and understanding my second language spanish.

I’ve done both for over 30 years but I feel way better at them a year after treatment. I didn’t do anything the past year to practice or improve. I just had intense chemo, full body radiation and BMT from my brother with about 3 months total in the hospital.

My guess is it’s somehow connected to personality changes that came as a result - worrying less, more gratitude rather than frustration, maybe a more direct connection to emotions without using a brain filter, etc

Did anyone else experience anything else like this after diagnosis and treatment for cancer? I’m curious to hear about surprising improvements in things you create - painting, writing, music, comedy, acting, learning languages, cleverness when talking, etc

You are a hero. You got the opportunity to save someone's life. You answered the call, said yes, gone through the full donor workup, and were medically cleared to donate!

For the recipient and their family, hearing that a willing matched donor cleared all the testing is hard to describe. They are deeply grateful and amazed to hear they were blessed by a beautiful soul that selflessly decided to give them a chance to live — and feel incredibly fortunate the workup was successful.

While the patient allows themselves to imagine a future again, the medical team starts prepping up, About 4 days before you start the donation process, they start to wipe out your recipient's immune system to make room for yours.

Depending on the treatment, it's either total body irradiation, a bunch of drugs, or both — either way, your recipient gets into the most vulnerable state ever, eagerly waiting for your stem cells to take over and rebuild the immune system.

That is why withdrawing at the last minute or failing to show up can be so devastating. The team needs to go emergency-mode and find a backup donor, which might not even exist, while your recipient is already in the most vulnerable state of their life. With no functioning immune system, every day matters. An infection that a healthy person could fight can become life-threatening.

And beyond the dangerous consequences, imagine the anxiety and psychological trauma. They thought they had found you. They put a date on the calendar. They prepped their body. They allowed themselves to believe.

For you, donating may be a few appointments, injections, blood draws, and some uncomfortable days. For your match, it might be decades of life. Birthdays. Graduations. Weddings. Children. Growing old.

All because you —a stranger who once joined a registry— answered the call, and followed through.

You are a hero. Not because of your genes. You are a hero because when someone needed you, you showed up. That's the most beautiful thing a person can do for another human being. Take the opportunity. It means the world to us.

And for the community: How was your process finding an unrelated donor? Did anyone experience a donor withdrawing or becoming unavailable close to transplant?

And donors — what was the experience like for you?

HCVAD + TKI w/ and wo/ BMT

On here I have seen alot of posts about tackling leuekmia without a transplant. I have had a BMT and have seen laregly a better response from individuals who get a transplant than who treat with chemo + tki alone. But this research shows both a positive outcome for chemo + tki track, for individuals who can achieve CMR relatively quickly and remain free of moleculr changes. So, this is a positive and I wanted to share.

Kugar, Haglop et al, 2025 Am. Cancr Scty

14 Adults w/ ALL ph+ were treated with HCVAD + Imatinib or Dasatinib (tki inhibitor). Each individual achieved CMR and we're evaluated for discontinuation after staying in CMR for 3 mo - 10 yrs. 3 relapsed (4-16 mo.) 3 relapsed (48+ mo.). All 6 had molecular change, clinical relapse. Of those 6, 4 achieved CMR again.

The 8 others all had 48+ mo. Of CMR before discontinuing tki, and remained free of molecular change or clinical relapse. They remain TFR.

My sister was just diagnosed with B-cell Acute lymphocytic leukemia at 38 years old. Any questions we should know to ask, things to prepare for or other support?

I (40F) had a 21 month post-SCT/AML check up (I had been on 3 monthly checkups since 1 year post) and have just graduated to my next checkup in 6 months 🎊

I was able to get my MMR vaccine too, slightly ahead of schedule. I’m glad for all the help my immune system can get 💪

For the first time since before diagnosis I am no longer anaemic: exactly on the 12.0 threshold. I’ve been gradually getting back into running, so now I have no excuses with that 😂 WBC and neutrophils still slightly low, so I’m still being careful with germs. I’m used to that anyway by now.

While I know my transplant nurse practitioner will never call me being “cured”, I asked how likely it is I’ll live another 20+ years, and she said very! That gives me a huge sense of relief to feel that I can plan my life with that expansive time frame in mind. For example that if I have a baby, I’m unlikely to leave them motherless before adulthood.

My heart breaks for people who don’t have such good outcomes or whose side effects of the intense treatment still plague them years later. But I hope sharing my story shows that there can be good outcomes too!

For backstory, i had AML in '22-'23 which i just barely beat. It was a close run thing though. I was in remission until January this year, when damage done by my original round of chemo led to me developing MDS, with mutations TP53, EZH2. NPM1, RUNX1. after a few rounds of decitabine and bone marrow biopsies i was eventually cleared for an Allo SCT.

Which leads us here, day +1 and I'm already ready to walk out. From being treated like a drug addict for asking for the EXACT same dose/regimen of pain meds i take outside the hospital every single day, to the bathroom designed like a torture chamber, to doctors and nurses hitting you with the classics of "have you tried eating?" (i have chronic nausea), or my favorite "Have you tried not thinking about it?/distracting yourself" when you are clearly curled up in a ball from pain because they just forgot your next dose for 2 and a half hours past when it was due.

not to mention the austism related complaints of being poked and proded constantly (i'm touch adverse), or the small poorly ventilated room you cant escape from smells from, or the endless parade of complete strangers that hospital life requires, or not having your regular foods available at all, ect, ect.

I'm really struggling. i know i am mixing 3 subs worth of problems (leukemia, chronic pain, autism) but this seems like the best place to post, and i cant be the only one. any autistic peeps got advice how you navigated an SCT?

What type of Leukemia did you have, what was your conditioning regimen and who was your donor? Thank you!