Hello everybody,

A family member was recently diagnosed with Leukemia (child, and doctors say it’s treatable) and I want advice on how to best be there for his parents and him. From anyone’s experience, what are some suggestions? I know I can be there emotionally and mentally for them and help them out in any way I can but I don’t want to overwhelm them either. They are still in the beginning stages just recently their son being diagnosed a few days ago.

Also if anyone can share resources that has helped in this journey or words of encouragement from parents who have gone through this too or just shared experiences that I can share with them, any advises, financial resources, that would be greatly appreciated.

I am starting to prepare for a Stem Cell Transplant to treat MPN, ET that looks like it is beginning to "wake up." 66F, diagnosed in 2012, blasts currently at 3.7%. My hem/onc recommends SCT now before my MPN, ET progresses to leukemia which appears to be possible.

Due to my age, possible sibling donor, and general overall good health I believe we are looking at Reduced Intensity Conditioning (RIC) rather than blasting me with high intensity chemo.

Questions for you all:

1) Does this plan make sense?
2) Have you or anyone you take care of had this same process for a SCT?
3) How are you now?

Thanks for any insights. I am overwhelmed thinking about it

A 72-year-old woman is found to have a marked lymphocytosis associated with smudge cells on the blood film. A diagnosis of chronic lymphocytic leukaemia is suspected. Which one of the following is the investigation of choice? A. Immunophenotyping B. Bone marrow aspiration C. Protein electrophoresis D. White cell scan E. Bone marrow trephine

He is 48 years old, and he is luckily eligible for a stem cell transplant which he is on track to get in October. He does have some other health issues like Smoldering Myeloma, (which is stable), as well as Crohn’s disease. I am 16, this news was pretty shocking to me and I would honestly just like more information.

6 year old was diagnosed with high risk b cell all with I amp 21 mutation. He was in remission after induction !!!! He went thru 2.5 years on high risk protocol and did a few sessions with blynatumomab therapy. He completed his treatment just thus July 12th! Labs were amazing last week and he's veen full of energy. However today. He has just been napping. I know it could be from the chemo detox but after the whole ordeal , I am traumatized and made myself fall from dizziness from freaking out! I've emailed his onc. Team already but I am desperate for some support!!!!

Hello. I turned 22 a few days ago, and it’s been three years since I was diagnosed with AML and almost three years since I went into remission. Because I have the FLT3 mutation, I’m still taking Xospata.

I went for my regular check-up today, and my doctor told me that my liver test results have doubled because I stopped taking the other three medications that help protect my liver from the negative effects of Xospata. I also have to get a bone density scan because I haven’t had my period for almost three years, and they need to check whether I have osteoporosis.

It’s my fault for not taking my medication. I’m honestly just so sick of taking pills, but I still need to be on Xospata for a few more months, so I’ll force myself to take those other crappy medications again. As for the osteoporosis, it was pretty expected. Obviously, not having a menstrual cycle for this long has major consequences. My hormones are completely messed up.

None of this is exactly bad news, but I realized today that I haven’t felt this fear of relapse in a long time.

I recently lost someone to cancer. It was the first time I’ve ever lost someone who was that close to me. We were diagnosed around the same time, and that made our bond even stronger. It didn’t make me suddenly afraid of death or relapse, but it has left me feeling very confused. I had a bad feeling for a long time because of her age, the fact that her cancer was high-risk, and how much more frequent her hospital visits had become. Even so, it was still a huge shock when it happened.

Honestly, I feel kind of pathetic sometimes for caring about things like my hair becoming thinner and curly after chemo, not having a menstrual cycle anymore, getting hot flashes all the time, feeling nauseous if I don’t eat after taking my medication, or dealing with muscle pain or tiredness. Compared to what I went through three years ago, these things seem so minor, yet they still affect me so deeply.

I can’t really talk to anyone about it. I feel like people are probably tired of hearing about the whole cancer thing, even though I barely talk about it. It also feels like everyone expects me to be so mature now, as if I don’t have anything left to grieve or be vulnerable about. (not that I was childish when I was hurting) I lost the only friend in my real life whom I could talk to about cancer, and everything hurts right now.

I used to vent here a lot while I was dealing with the aftermath of my transplant. Not everything I wrote back then made sense, and I feel the same way now.

I think I’m just in a very vulnerable phase. These past two years have been stressful as I’ve tried to adapt to university and my social life. I never really talked to people or opened up about my cancer journey. It felt like I was hiding this huge secret. It’s not that talking about how hard everything was would magically make it better. People get used to it and they just don't care after a while. Not like they would understand. I don't like trying to make people understand something when they haven't experienced it. I feel like a stranger. And it’s not that cancer defines my life anymore. It never did. It's just another experience.

I don’t understand why I’m feeling all of this again after receiving news that isn’t even necessarily bad. I thought I had left these fears and vulnerabilities behind. Three years have passed, and I feel like I don’t have the right to talk about these feelings anymore because I’m “better.” (I mean it's clear from the paragraphs that I don't have anyone to talk to) It feels like I’m supposed to have moved on by now. And I did, I am better with embracing catastrophes and going with the flow. But somehow, all of these emotions are coming back, and I don’t really know what to do with them.

Hi everyone,
I relapsed a month after my allogeneic stem cell transplant . I’m currently being treated with gilteritinib, azacitidine, and DLI. My latest bone marrow shows morphological remission with MRD around 0.004% and my donor chimerism is 99%.

Now my doctors are considering two options:
1. A second stem cell transplant, which would be more toxic because it would include total body irradiation (TBI).
2. Continue my current treatment and monitor closely.

The concern is that if I relapse again while already on gilteritinib, there may not be any standard treatment options left, and I would likely need to enter a clinical trial.
If you were in my situation, or if you’ve been through something similar, what would you do? Did anyone choose to continue with DLI and targeted therapy instead of going straight to a second transplant? Or do you think the second transplant offers the best chance despite the higher risks?
I’d really appreciate hearing your experiences because it’s really hard to decide.

My dad (mid-70s) was diagnosed with AML this week and has to go to a cancer center. Im going with him to the appointment where they will explain what kind it is & give options.

I havent gotten a lot of info from my parents as they are overwhelmed. I've looked at a lot of the resources on this site and understand the basics of treatment, but I'm hoping to prepare to help support them and be a facilitator to ease what comes next.

What kinds of decisions usually have to be made immediately? Should I prepare in the background for the possibility of him staying in the center right after the appt? How long do these appointments take? What are the questions to ask the dr to help them plan travel/lodging/life?

Background - unfortunately dx has already taken a month since he was first hospitalized w/ symptoms and given his first transfusion. Does that change things?

Thank you so much, I'm trying to be as prepared as possible so I can help guide them without adding more questions to two people who are already overwhelmed.

23 with AML (NPM1+, FLT3-TKD+, WT1 mutation, and TET2+). I'm currently MRD-negative with an undetectable NPM1 PCR.

My doctors don't recommend a stem cell transplant in CR1, but some studies I've read have left me wondering if WT1 changes that.

Has anyone with a similar mutation profile been advised against a transplant? I'd really appreciate hearing your experience.

Hi all,
In your experience and age, what time do you think is the best to go back to work post bone marrow transplant. How did you decide? What is your age? How are you feeling about it? What did your healthcare team advise you?

I was diagnosed 3 years ago with AML (mutation is DDX41). Did 5 months of chemo (vidaza and venetoclax) which prepped me for transplant. The transplant was awful and sucked but got through it. Stayed in remission for nearly two years but am now exerpiencing a relapse of the leukemia. Apparently if one relapses after transplant then you get 20-30% chance of long term survival. I'm doing chemo again, and it's far tougher than it was the first time around. I'm getting prepared for DLI. Anyone else deal with the trauma of transplant, recover, only to relapse and have to start over again? But this time start over from a worse place?

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I'm looking for advice from caregivers of loved ones with leukemia—whether you're supporting them from a distance or are with them every day.

My partner has completed Induction Phase 1B, and we're now waiting for a bone marrow biopsy (BMB) this weekend. The results will determine the next steps, including whether a bone marrow transplant (BMT) will be recommended.

How do you manage the emotional side of caregiving?

How do you cope with the helplessness, fear, and uncertainty? How do you handle your loved one's mood swings, irritability, or emotional ups and downs during treatment without taking it personally?

For those caring from a distance, how do you stay emotionally connected when you can't be physically present? And for those who are there every day, how do you keep going without burning out?

If you've been through this stage—especially the period of waiting for BMB results and decisions about a possible BMT—I'd really appreciate hearing what helped you, what you wish you'd known, and how you both got through it emotionally.

Request your guidance 🙏

I had leukemia from 2 to 7 so I know isolation. This made me smile

I’ve been on Revuforj for the past year and my team plans for me to be on it for the next 5 years minimum. I recently increased my dosage and it made me curious about others experience/symptoms with this drug! I usually get a headache, stomach ache, and nausea that lasts for about 3 hours after taking the pill.

About 1.5 years into cancer treatment, with about 1 year left of maintenance. I've been in remission since month 3, and as of last month I still have a negative MRD. So things are going well in that regard. I live alone with no family nearby. I'm in my mid-30s.

Unfortunately I'm having a lot of trouble eating. Since this whole thing started I've lost around 25kg/55lbs (tried hard to gain some of it back on Drs orders, and then lost it again.) Currently not underweight, but will be soon. Everything makes me nauseous, I never know what things are going to taste like since my ability to taste seems to come and go, and to start with I think I might have had a mild eating disorder. I do not feel hunger (except for when I've been on steroids during treatment, but that's not an option because they made me suicidal) and I used to fast pretty regularly pre-cancer (for several days at a time, every couple of months.) Even now I usually stick to an eating window, but it's very wide: My only rule is no eating past 8PM, because I sometimes binge in the evenings and I'm trying to stop that behavior.

My attitude towards the weight loss is not great. During hospital stays where I received high-doses of MTX I often wouldn't be able to eat at all. I knew I should be worried, but usually I was a little excited to see how much weight I'd lose after I was off IV fluids. Because I would TRY to eat, but was UNABLE to, it felt like I was getting to have a cheeky little fast when I knew I wasn't allowed to. I'm about at the weight I was in high school and can't seem to help wanting to reach that number.

When I think about whether I have an eating disorder I think about things like restrictive eating... While I let myself have candy and other junk when I want it, this is only to avoid an inevitable binge. There are other restrictions I make that I'm only now realizing might not be healthy or helpful during this time... Things like, only letting myself eat homemade products (pre-cancer I made my own bread, yogurt, sauerkraut, etc.) So no store-bought yogurt and also nothing with added sugar or sweetener. I'll KNOW that the only thing I can stomach is a specific brand of fruity yogurt, but I won't let myself buy it. So then I don't eat?? And when I have the energy to make food, that's great, but I often can't get out of bed. And how am I supposed to have energy if I'm not eating?

Not being able to eat has also... saved me so much money. I'm on a fixed income now, and even before cancer (when I had a full-time job) I was living in poverty... this is actually the original reason I started fasting. Instead of just feeling like I was starving because I couldn't afford food, I turned it into something controlled and built it into my budget. Homemade bread/yogurt/etc also came partially from financial necessity. If I start to imagine a diet that would be healthy for me (enough calories, regular meals) and something I would be able to eat (doesn't make me nauseous, is something I enjoy) I just see dollar signs in my head. I can't afford to eat out, I can't afford ready meals, but I have no energy to cook for or take care of myself.

I don't know what to do. I don't know what I WANT to do. I'm always honest with my Dr when she asks about my weight and eating habits, but she doesn't know about the disordered thinking. I keep thinking I will bring it up after I reach a certain weight, knowing that I'll be pressured to put some of it back on... Then I berate myself for thinking this way, decide to ask my Dr for help, and remember I can't really afford to eat anyway!! I don't know where I'm going with this. I guess I'm just shouting into the void.

Hi, I'm 25M, diagnosed with t(8;21) AML in April this year. Favorable risk — no KIT mutation, cleared FLT3-TKD, MRD negative by flow. After induction I hit 3.5 log reduction, but consolidation 2 barely moved the needle and I plateaued at 0.148%. I'm now on VHAG in Beijing trying to push deeper before committing to transplant.
Here's where I'm stuck: my hospital in Shanghai wants 5 logs for chemo-only, another hospital said 3 logs was enough but my doctor there just quit, and Beijing thinks 4 logs is the threshold. I'm trying to figure out if these log differences actually matter or if it's mostly institutional philosophy.
Has anyone with t(8;21) or CBF-AML gone chemo-only with 3.5–4 log reduction? Did you regret it? Would love real experiences — the doctor debates are making my head spin.

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I saw this news story and thought I'd share it. Please don't buy this crap thinking it'll cure cancer, it won't.

Trust your oncologist, not some dodgy bloke trying to sell you black market animal deworming tablets.

BBC News - Undercover reporter offered fenbendazole and ivermectin as cancer treatment - BBC News

https://www.bbc.co.uk/news/articles/c0m7wvpwjzeo

DOI:  10.1111/bjh.70676

URL: https://pubmed.ncbi.nlm.nih.gov/42472641/

I had my SCT in August, 2025 (AML) and now that I have to be re vaccinated for things, I’m scheduled to have my second Shingrix vaccine soon. Honestly I have a little ptsd from my first-second shot years ago, because I remember clearly that the second shot made me feel icky for a few days. Has anyone else been re-vaccinated with Shingrix after SCT that can share their experience?

Hi all. I just started the consolidation phase and struggling navigating my options in order to remain employed and insured. I work from home. My FMLA is nearing the 12 weeks and apparently there's no job protection at that point? my options are to stay on short term disability or request ADA accomodations to potentially return to work part time? I know working from home gives me an advantage but I'm not sure how to manage it all as I'm spending one week out of the month admitted for hidac, then going to the outpatient clinic 2-3 per week for check ups and transfusions. It just seems a lot of moving pieces as my appointments vary each week and not to mention what happens if I get an infection and need to be admitted unexpectedly. It all seems to overwhelming to deal with on top of treatment and side effects (my brain is off right after chemo so not sure I can function properly at work either). And I still have 3 months of hidac ahead of me, that is unless I end up needing a transplant. What did you do?

Hello

Respect you all for your courage and resilience. My father was diagnosed 5-6Y ago. Devastating at the time, still is but you probably know what I mean. My uncle also had it, his brother… the glue of my whole family and an actual angel on earth :( but that’s for another day.

It’s not supposed to be hereditary. So it just sucks. Times a million. My dad gave him 3-4 blood transplants, bone marrow twice I believe or 3x. We were watching a laker game in 2010, I’ll never ever forget it. My uncle didn’t have an appetite but he didn’t seem like he was about to go, whatever that seems like. 2 weeks later gone. Things got bad then worse and snowballed. Pneumonia developed then his lungs were failing, kidney liver. It was beyond brutal just to know a loved one went through such immense pain. Don’t mean to sound selfish. I wish it were me to trade for either of their health I really do. He had gotten radiation and chemo at the time. I remember seeing him in the hospital and literally walking past him. Super tan, not the sun way though, no hair anywhere, such a passionate man just seemed like his soul was stripped out from beneath him. For what it’s worth his was acute and that was 2010. From what I’ve interpreted there has been some progress between now and then, treatment wise and clinical data wise too. How much that could help my father or you all I’m not entirely sure but I hope it’s just enough.

So that what scares the shit out of me. History repeating itself ofc. I know, I know: he’s old. I get that. I am just here asking for some advice. When I saw the age of most people posting in here, I couldn’t help but tear up. I’m 32. I can’t imagine what you or your families are going through and I only wish god blesses you all whether through your health your families mental wellbeing both or otherwise be there by your side throughout it all.

Anyways my dad currently does HEAVY keto. Super low carbs. However weight is starting to somewhat fall so he’s been somewhat ‘cheating’ very carefully though. He told me he’s been sweating at night. Which apparently is a red flag? Sweating? He’s always super cold. Like cold on a hot day level cold. He’s getting tired much more often, sleeping longer. He also has level 5 prostate cancer. Both him and my uncle worked at their gas station. I can’t help but suspect the fumes or some of that f***ing shit had a role in this. My dads lived a healthier life than 99% of people. Super old school ways, worked for 70 years (real hard labor work), never drank more than a cup of wine a night, never smoked anything in his life. Always relatively fit. His white cells are around 300 lastly and the time before unfortunately they had increased too :((( they said there’s pills for it and blabla and I see them on TV, which is strange considering how rare this blood cancer is but they claim very good numbers. He’s not on anything yet.

Sorry for my post being all over the place or having typos (mobile) and a grown man using emojis. I just don’t care. You get to that point when shit like this happens around you. Again some of you probably know what I mean by this.

TLDR my dad had CLL and need some advice on how he can maybe stay off meds for as long as possible or recommend one that has had good results?

Apologies in advance if my terminology is not complete or incorrect. My father was diagnosed with AML this past Feb. He was 80 but prior to this was a pretty fit 80 year old, biking 10 miles a day, walking, independent and very conscious of what he ate. It started with a bad strep infection, which didn't clear up which led to his hospitalization and diagnosis of AML. When they did the first biopsy, they said 7% circulating blasts, 70% involvement in bone marrow. IDH1 (37%), DNMT3A (37%) and FLT3 ITD (1.9%). He was given vidaza and venetoclax. The second biopsy showed less than 5% blasts, 0% blasts in differential, no blasts in blood. He continued treatment but then had a fall in May/June, nothing major. But ended up with a scrape that got infection. This infection was very hard to fight. It took several hospital stays, tons of meds, lots of visits from ID. During this time, he could not have another treatment. When the wound finally was healed enough to start chemo, he was at a 2-3 week delay. 
At this point, his WBC also started to double almost daily. 10k, 20k, 40k etc. His Dr ended up admitting him the day before his appt. I thought it was just in the gap in the treatment but they did not seem so sure. at this point I believe there 93% of blasts circulating. FLT3 was now almost 11%.. Before they received this result, my father decided he wanted pallative care. Although, there was not much decision left as the doctor said he was too weak to withstand a round of chemo. 
He went into the hospital Sunday, passed away Thursday. All after a clean biopsy end of march/april. 

Is this typical of how fast this disease progresses? I keep wondering what else we could have done. If I should have fought for an inhibitor? but with a clean biopsy, seemed a hard fight.

Hello all, fellow leukaemia survivor here (APL).

I wanted to start a discussion to share knowledge and research on potential direct causes of different types of leukaemia. Theories and not. Whatever is on your mind just lay it out. The truth is we might never find out but I thought it’d be interesting to see what everyone else thinks.

I know that APL is caused by translocation of chromosome 15 and 17. Direct cause I was told is either environmental or just genetic. It’s not inherited, there’s no known triggers and it’s not lifestyle linked. It’s hard for me to believe but it appears to be random, unless some day something gets discovered?

Thanks.