My partner recently has been diagnosed with a aggressive form of leukaemia- we still are waiting one more genetic test to know just how much it has spread into his central nervous system.

The doctor came in yesterday along with a social worker and a clinical nurse and advised my partner he needed to complete a power of attorney form and also prepare his will and a justice of the peace came to the bed and officited it that day.

The doctors keep saying he will start a paeds protocol on Wednesday but we’re still waiting for that last test to know what “protocol” they will go down. Not one of these drs have said anything hopeful no talks of it being treatable or manageable just that we have to wait and see how his body will react to the chemo and that he is on the emergency list for a stem cell transplant if it’s needed.

The thing is he was healthy and fine last week. Yes on and off he had minor things come up health wise like a sore leg or a cold but we have children and everything was able to be put down to just life.

He only went to the dr and had the blood test done because he felt like in his words he was dying and well I was because the dr said if he hadn’t of come in on the weekend just gone he would be dead by now.

I get it if it quacks like a duck looks like a duck then it’s a duck. But I just don’t want to accept any of this.

Is this normal for a dr to be pushing for affairs to be in order before all the testing and treatment have even been planned properly?

Today 17th October marks my two months since I was diagnosed and on imatinib... Little bit side effects like mild bone pain and occasional dizziness... When I started my treatment my TLC counts were 3,25,596 ... My next blood tests have been scheduled next month... Let's hope for the best🤞

To parents that have gone through their toddler having the Blinda pump for the 30 days. Any tips for getting a 2.5 yo to carry or move her own backpack?

Our toddler currently refuses to wear or pick up her backpack with her blinda pump in it. This requires me or my husband to constantly follow her around. We already had one ER trip because she moved before we were ready and caused her line to fail and LOTS of blood to come out. We barely got the pump back on within the four hour window and we were in the car to the ER within 15 minutes. Even this was not enough for her to understand, you need to move this back back with you. So any advice??

Hello. I have been browsing posts on here and the internet and felt like it was time that i needed to reach out for some support from the leukemia community with our situation. I am learning more as my partner was recently diagnosed with t- all / etp-all and started hyper cvad with venetoclax on 09/28 - in patient 7 days for treatment. He is currently hospitalized again due to complications with neutropenic fevers and gastritis since 10/11. His platelets made a big jump today to 65, coming from as low as 10. But his electrolytes are still off (phosphorus and calcium mainly), and he can't shake the fever that comes a couple of times each day/ night for the past week - up to 103 most days. They have tried multiple antibiotics and an antifungal now, but still no change, and his abdomen pain is getting worse, as well as bloating is visible from looking at his belly. He just had another abdominal x ray this morning. I feel lost and helpless to him right now. Would really like some advice from those who can help shed some light on similar situations or any information/support would be greatly appreciated. I am scared for him.

Hey everyone, I was diagnosed with CML (Philadelphia chromosome) about 8 months ago, went on disability bc of the medication knocking me on my ass and now I’m slowly getting back into (physical) work. I know I’m not physically the same as I used to be and I wanted to see if some of you have tips to rest and heal specifically my feet up to my knees. It seems like it’s aching for way too long and when I get up from my bed after work I struggle to stand. I’m trying to find and office job but in the meantime any advice, products, diet changes etc would be greatly appreciated. I’m going to discuss this with my care team on Monday but I’d love to hear from y’all.

TL;DR I’m looking for recommendations on how to avoid and treat leg/feet/knee pain :)

I, 30F, got diagnosed with AML in May 2025 and had a SCT in October 2025. This whole time I’ve been really good at staying positive, but I’m having a hard time right now.

Overall, my transplant went really well and my tests have looked good. A week ago my neutrophils and platelets looked a little low but I thought it was just a fluke.

Today, my HLA CD33 donor percentage is down to 92% from 100% a few months ago and my neutrophils are 0. I had a biopsy scheduled for 10/29 and they moved it up to Tuesday.

I’m really scared and can’t stop thinking about the worst possible scenarios. And I feel like I was finally getting some of my life back and started reintegrating into society.

Not sure exactly what I’m looking for but maybe just others who know how it feels to be scared. 🧡

73M, AML M2, adverse risk, not transplant-eligible. Two cycles of azacitidine + venetoclax:

• Cycle 1 (April): aza 130 mg SC d1–8 + ven 100 mg (14 Days) → blasts 23%
• Cycle 2 (June): aza 130 mg SC d1–7 + ven 100 mg (21 Days) → blasts 0%, CR

Cycle 2 was rough. He spent about ten weeks with platelets around 2,000, four transfusions that produced no increment at all, a GI bleed, and three hospital admissions. He was very weak through most of it.

His counts came back on their own over the last three weeks — platelets 51k, Hb 10.1, blasts still 0%. He’s eating properly again and asking when he can travel.

His hematologist now proposes a third cycle with azacitidine alone, no venetoclax. She was straightforward with us: it doesn’t guarantee anything, but without it relapse is likely. She’s leaving the decision to us.

What I keep coming back to: at diagnosis we were told there wasn’t much hope. Now there is some, and the answer is another cycle. I don’t want him to go through one just because it’s the standard next step on a list. And I don’t know where that list ends — do we keep going until his marrow stops tolerating the drugs?

What I’d like to hear from you please:

Did anyone here stop treatment after reaching Remission on aza+ven? How long did the remission hold, and would you make the same call again?

And if you switched to azacitidine alone : was it genuinely easier on the marrow, or did the cytopenias come back anyway?

Thanks, any experience helps.

• Anti sickness tablets take 30-60 minutes to work so take them in advance of your chemo. They last about 5-6 hours so I usually take some later that evening too to prevent any evening sickness. (I don't go without them after puking for 4 hours once when I didn't take them one evening).
• I take Ondansetron and Domperidone on days I have chemo to prevent sickness but they can make you constipated.
• I recommend taking one sachet of Laxido (or other similar prescribed laxative) on any day you're taking anti-sickness tablets to help pre-emptively prevent any constipation. And obviously take more if you actually get constipated.

Obviously only take what you're prescribed and follow the instructions. (I'm in the UK so your drugs may have different brand names wherever you are).

Hey everyone, I have diagnosed in 2025 sept and since then I was on dasatinib 100mg within 3 months my levels were from 33% to 0.0168% and in Aug I saw rise or 0.0408% but doctor said flatuates are common on 0. 1% less than ..but about the side effects I’m starting I saw acne and notnhing else ,from Aug it all started with ankle pain and some dizziness but from last two days i won’t say dizziness it’s like falling or feel like drunk alcohol , I went ER they scanned said nothing has damaged or everything is ok but still I feel that he says meet oncologist and say what’s going on !, is same thing happened to anyone ?.

I’m 26 and lost my dad (56) on December 30, 2025, just two days after he was diagnosed with acute myeloid leukemia (AML). Everything happened so incredibly fast, and I’m hoping to connect with other young adults who lost a parent suddenly to AML or another aggressive cancer.
I’m especially interested in hearing from people who had almost no time to process the diagnosis before losing their parent. I’d really love to talk to others who understand this experience.

i weigh about 315lbs and my hematologist told me today that my weight is a complicating factor to receiving/recovering from a bone marrow transplant. i have an appointment with an endocrinologist next week to discuss glp-1s. i’ve been on ozempic before and had severe side effects so i stopped taking it and didn’t try any alternatives before my first cancer diagnosis (before AML). i asked my solid tumor team about weight loss medication once i was a couple of months out from finishing treatment and they were unsure. my hematologist however feels it could be helpful.

has anyone had a similar experience? gotten a transplant and recovered while obese? intentionally lost weight for a transplant? been on a glp-1 during leukemia treatment/chemo in general? i’m actively on oral chemo and with my appetite and energy level i’m worried i won’t lose as much weight as i need to, especially if a glp-1 isn’t approved or if im not tolerating it well.

any advice or personal stories would be greatly appreciated.

Hi, im 21 F! I am comin up 1 year post transplant this Saturday (yay). I was just wondering if anyone went back to smoking weed? At the moment I do take edibles, but I truthfully miss smoking/vaping. The first time i got cancer i smoked throughout treatment but heard SCT are a lot more aggressive than chemo alone, so I refrained and was sober for the first 100 days, then moved on to micro dosing, and now im a somewhat regular gummy user. Gummies are cool but getting expensive and i just overall prefer smoking/vaping, so im wondering if anyone got cleared to do so or if its just best not to.

f28 2 years in remission from AML (runx1, 8;21).

Every time I get sick it’s the same story. I feel like i’m dying again, like i’m relapsing, like it’s all over again. I woke up in sweat this morning and i’ve been crying all morning about it. my team is likely sick of hearing from me, especially since i passed the 2 year mark recently.

I feel like i’ll never feel safe in my own body ever again. even when all tests come back clear, the sense of security has been stripped from me.

My 36 yo sis is diagnosed with AML and is right now on Aza Ven and medication for a lung infection. She has been hospitalised for more than a week.

I want to get her everything that can take her mind away for some time / make the hospital stay less unbearable.Those little things that we forget

please suggest.

for instance, i realised she needs vaseline for chapped lips.

Hi, everyone. I (23M) was recently diagnosed with CML last week. I went to the hospital for papilledema (swelling in the optic nerves) and was given my diagnosis last Friday. For the most part, I’ve been ok. What I’m recovering from right now is the spinal tap they did to address the papilledema a few days ago. In addition to that I’ve had follow ups, phone calls, numerous labs, and a multitude of other things happen to me in this past week. It’s crazy to me to think that this time last week I was in a classroom teaching and my life would drastically change overnight.

Mentally and emotionally I’ve been ok. It helped that my oncologist told me I wouldn’t have to make drastic lifestyle changes or have any aggressive or invasive treatments. What nobody prepared me for is the constant poking a prodding. Not just talking about labs, but the barrages of checks ins from friends and family. Not that I’m not grateful for them. Every time I find myself getting upset, I chide myself and remind myself how blessed I am to have the support system I have. But sometimes it gets overwhelming if I’m being honest. I guess I foolishly expected life to not change as much but how could it not when I received a diagnosis like this? Also, part of me feels if I didn’t have the spinal tap, I’d feel a lot better. I know it was necessary, but recovery has been the worst. All I’ve wanted to do these last few days is sleep and be left alone.

Anyways, I have to start desatinib soon and wanted to know what life on that medication would look like. Like, what are some side effects you all have experienced and what did your mental and emotional states look like while batting CML? What are some things I should keep in mind? Anything helps!

TL;DR: I (23M) was recently diagnosed. What are some things I should be aware of or keep in mind as I start this journey of battling CML?

Buen día quiero compartirles que estoy muy triste porque mi esposo falleció hace unas semanas por la complicación de neumonía el se encontraba en etapa de cuidados paliativos por Leucemia Mieloide Aguda, tenía 44 años. Nos deja mucho recuerdos, siempre fue una persona que lucho contra la enfermedad ya que su diágnostico fué en febrero de 2022, pasó por el tramiento de inducción y consolidación, por un trasplante de médula que lo mantuvo en remisión durante más de un año, luego vino la recaída y siguió luchando hasta pasar por un segundo trasplante...pero en febrero del año pasado tuvo otra recaída y a partir de ahí estuvo con azacitidina y venetoclax durante 1 año y cinco meses en remisión con ese tratamieto, a la par estaba en protocolo para un tercer trasplante, lamentablemente la recaída lo alcanzo y a pesar de que había pasado todas las pruebas del protocolo falleció antes de poder realizarlo. Casi 5 años estuvo en lucha, pero está enfermedad es terrible. Lo amo mucho y lo voy a extrañar siempre, me deja dos hijos y 21 años de recuerdos que atesoro con todo mi corazón.

Hi all,

I’ve mostly been a lurker the past 4 months since my mama (70F) was diagnosed with AML. It’s been a whirlwind and this community has got me through some tough times - so thank you.

My mum’s SCT/bone marrow transplant got bumped forward and I will be flying from London UK to New Zealand be her donor next week. My mum is extremely concerned about me being a donor and is set on believing it will harm me in the long term. I’m donating regardless but it’s definitely got me nervous.

Has anyone here been a stem cell donor? I would love to hear any experiences you could share about the donor experience and what to prepare for mentally or physically! Thanks in advance 🫶

I recently saw this post: https://www.instagram.com/reel/DebtvT8pGlp/

Is it really great??

Just wanted to vent. My 17 year old son passed away in August from APL. From the time of his first symptom to passing away was only 6 days.

It started with neck pain, next day a headache, then the next his leg wasn't working. I took him to the local ER.. They did some tests and rushed him to the bigger hospital.

That was a Sunday. He was gone on Wednesday.

I'm still in shock and expect him to come home from school. I still forget and buy things for him at the store.

I'm still so angry. I just doesn't feel fair that he left the world so young.

Hi,

Not sure what I’m looking to ask besides just some words of comfort my partner 31 (m) was diagnosed yesterday. We have 5 children. I’m in shock. I don’t know how to explain this pain of not being able to make him better.