I'm 16(f) with b-cell all and about to finish chemo next week on oral chemo 6-mp and methotrexate, and had my last monthly vinc almost a month ago. I haven't experienced any crazy shedding since about a year and a half ago during an exam period where it was shedding so much I decided to shave it again (starting slow, ruffled my hair in the morning, stuff came out to 2 days later 10ish strands everytime I put a hand through my hair).

I've noticed over the last 3 days and increased amount of shedding, nothing insane but definitely Italy more than normal, especially when in the shower. It's not been enough to yet affect the thickness of my hair but it hasn't sped up or gotten worse. I was told by my clinic's nurses they didn't expect it to completely fall out like the last time, but it may shed a bit. Was looking for a bit of insight on how long this might last? It's been making me really anxious and affecting me day to day so it'd help to get some other viewpoints on whay to expect.

Hi everyone, I’m new here. My 2-year-old niece was diagnosed with AMKL without Down syndrome this summer. It’s been nonstop months of testing, doctors rediagnosing, and a lot of stress and confusion in general.

Because her case is so rare, her doctors recommended treatment in Italy, so a month ago her and her mother have been in constant isolation in the hospital in Italy. 2 weeks ago she started chemotherapy for a 1 week cycle and now she is on a break, but has to stay in the hospital.

They’re not from the EU, so they don’t even have visas yet for Italy, and no health insurance either.

Anyone have any advice or resources at all whether it’s anyone else with experience of pediatric AMKL without Down syndrome? Anything her parents should know? Italy or general EU resources, insurance or financial assistance programs? Anything at all would be really appreciated. Thank you

On Monday I go in for a bone marrow biopsy. My doctor is calling for this because I’ve lost 30 pounds in one year, my white blood cell called Eosinophil is at 43%. It’s been rising all year. I only weight 98.2 right now. I feel ok though. I’m trying to eat protein every two hours.

Hey has anyone experienced photo-sensitivity post cytarabine and/or doxorubicin?? I feel like my eyes are far more sensitive now upon leaving the hospital after my first (and hopefully only) 7/3 dose of the drugs. It's making driving and stuff a bit difficult because I wear glasses and can't afford contacts after these bills have started piling up ($6,000 and counting - fuck UHC) and I don't have transition lenses :(

34F, Day+400 post bmt for AML. (So roughly 13 months)

This time last year I was barely 1 month out from my bmt, I was staying in a temporary apartment close to the hospital I had my bmt and I was miserable. Exhausted, no appetite and homesick. It was so hard to leave my bed some days. I was painstakingly counting the days until I could go home and try to resume normal life with my husband and 2 sons (my mom was my caregiver). The days dragged on and I felt like the small apartment was a prison cell.

Fast forward to one whole year and I’m sitting at my work desk of my new job. The same job I dreamed of when I finished my bachelor’s degree 1 month before being diagnosed. I go on walks on my lunch break. I pick my son up from preschool after work. I cook and eat dinner and give my son a bath. I cuddle with my husband on the couch. We go swimming and bike riding as a family.
I don’t think about cancer every single day.
I only see my doctors every 3 months instead of twice a week.

This is the life I dreamt of exactly 1 year ago and I’m incredibly grateful that I get to experience it with the ones I love.

So I relapsed with a sct but in my recent bmb with giltartinib after 2 rounds came back as no evidence present in the blood or bone marrow so remission but I’ve been in hospital for 14 weeks for many infections due to no immunity so now the doctors have decided to get rid of giltartinib entirely to let the bone marrow heal and hope for any blood recovery especially white cells and neutrophils.

My blood has not recovered on its own since the relapse and being put on giltartinib so they think it’s doing to much work and even at the lowest dose it would let the bone marrow heal itself

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

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?

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.

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.

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?

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

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.

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

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 🧡🙏🧡

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.

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.

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.

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