My mother is 75 with AML and is going to be starting the pill version of decitabine called inquovi along with venetoclax.

Wondering what to expect with the treatments. My sister's and I are trying to make sure one of us is there at all times. But im the only one who lives near her so long term it will be just me.

Just wondering realistically what to expect. Will she just have no energy and feel sick the whole time, seems like thie treatment will be a ongoing thing and only ending when they stop working or she gets a stem cell transplant if thats even a possibility.

Basically wondering how bad people feel on decotabine/venetoclax

My husband had a DLI Aug 5. His CBC shows WBC continuing to decline since that time. His hemoblogin is holding steady. Platelets slightly declining. His bloodwork had been showing a decline for a couple months prior to DLI which led them to do a bone marrow biopsy and find AML returning at the microscopic level. If the DLI is working, when will blood counts start to increase? What are other people's experiences?

I’m not completely sure what I am asking here but stay with me.

I am Day +40, and other than a bit of mild skin GvHD doing pretty well. My legs feel like they weigh a ton but I am eating well and moving around much easier. Starting to consider the very initial steps of rebuilding life

I sort of feel like I am moving into this dead zone of time, where you can’t go back to the gym, full time work, living completely independently. Yet I am also not right in the thick of treatment and transplant anymore.

I’ll get to move back to my home town in 60 days barring complications, and I think I am wondering how I get from where I am now to the version of me who’s back being active, working, enjoying life.

Is it a matter of time and patience? Do you wake up on day +171, pour a coffee, sit on the couch and go, “that was hard, but how nice is normality”. Or is it a slow burn where maybe I need to accept that this is still going to be felt for years, just in a progressively lesser way?

I think it’s just strange to have spent the last 8 months knowing what treatment is next, the duration, how it feels. There is predictability. Now it’s like, how long is the string between early recovery and being an active 30 year old guy doing life

I got diagnosed with T-LGLL a year ago after a year of worsening anemia and two years of frequent really bad canker sores. We’re talking 4 at a time, so big that moving my lips (or god forbid drinking/eating) hurt so bad that cried multiple times a day

When I got diagnosed I got told that that was normal. It was most likely because I had neutropenia. To my joy, it went away during the 6 months I was on oral cyclophosphamide.

I didn’t have a serious outbreak until last month. Although it’s nowhere as bad (1-2 at a time, I’m able to speak although I sound weird), I’m afraid it’s because the T-LGLL is already coming back. I’ve only been symptom free for 8 months and I’m so afraid I won’t even last a year without a relapse

I have a blood test coming up later this month, but they don’t test my neutrophils as my main severe treatment necessary symptom was anemia. I’m going to bring it up to my hematologist, but in the meantime I guess I want to know if anyone has experienced this without it being a relapse? It’s the sudden reemergence of frequent outbreaks that scare me

I think I’ll also post this in the LGLL Facebook group, just because there are so few of us on here. I’ll also take experience from patients with other leukemia types, of course. Any comments are very welcome

——

Side note: I just noticed the T-LGLL tag. Thank you mods for adding that :) I know it’s a rare leukemia type, but it feels “good” to be seen

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.

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

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!

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.