r/leukemia

My husband was diagnosed with AML with the FLT3 gene in October of 2025. Did the chemo and transplant on 12/23. His doctors said he was in remission two weeks ago, and then he had to go to the doctor last Friday for a checkup on his port removal and they found blasts again. Somehow, this is worse than finding out for the first time. Because if all the treatment didn’t work on round 1 how am I supposed to have any faith in round 2? I’m more terrified now that he’s not going to make it than when he first got diagnosed.

I don’t really know what I’m asking or why I’m writing this. But I’m scared.

I was diagnosed with high risk AML in November 2024. did 4 rounds of chemo and sct in April 2025 . it's been a lil over year now and I'm doing great so just putting this up for anyone who needs any answers or hope. it can get better and i hope it does for everyone going through it. :))

My dad was recently diagnosed with MDS and I’m still learning about the disease and what may have contributed to it.

We’re seeing Dana Farber soon to discuss treatment options including meds and possibly transplant and I’m trying to understand as much as I can before that appointment.

One thing I keep coming back to is the role of inflammation in diseases generally . My understanding is that many diseases start with some kind of inflammatory or cellular dysfunction process, and in MDS that seems to include some level of ongoing inflammation in the bone marrow potentially due to with triggers like prior chemo or chemical exposures that can damage DNA and disrupt normal cell function.

Things I’ve been reading about include red light therapy, acupuncture, diet changes, and certain supplements or herbs, though I know the evidence is limited and I’m not treating any of this as a cure. I’d really appreciate any insight, personal experience, or other approaches worth looking into.

Also I know this is a controversial topic and some people will come back and say “there’s no proof this works.” That’s okay….i don’t think our current scientific focus as a country really is on alternative remedies … the money is always in big pharma.

I’m mainly interested in hearing from anyone who has experience with MDS especially around inflammation, environmental triggers, and functional medicine/ complementary approaches that may help alongside standard treatment.

Hi, my younger brother was diagnosed with ALL last December and my doctor said we will go for BMT as his cancer is high risk . We are three siblings one elder sister,me and my younger brother.me and my sister are a full match but my younger brother is half match from both of us.

Want to know about haploidentical BMT transplant and it's outcome

Hello all,

My dad, age 67, was just diagnosed with MDS . He has some bad mutations ASXL1 (times two clones), U2AF1, PHF6, IDH2….

Only mildly low counts in all three lines and 3% blasts. Healthy and fit guy overall.

We are talking to top cancer centers about options and bone marrow transplant

I’ll be honest..,.we are feeling very concerned about the transplant option, as the more we read, the more complex and high-risk it seems especially given his age and mutations (increasing chance of relapse).

If anyone has experience with BMT or managing MDS with a similar mutation profile, we would really appreciate any insight or guidance.

Thank you all for your time and help 🙏

I have Ph- B-ALL. Doc says I could be cured with only chemo, I don’t really understand that tho. If the bad bone marrow is still inside me won’t I always have a chance of developing the same cancer? I just don’t understand it much, maybe someone who’s been thru this can help me with this. I’m a 26m and go to OSU James cancer center which I believe is an S tier hospital when it comes to dealing with cancers. Idk if any of those things apply to my question but figured I’d add it.

⚠️ rant

Smtimes it just feels heartbreakingly soon, there's so much I could have been, done, so much I wanted to and I've been trying to be strong for my family, they're heartbroken, i did not want to go like this, and I think of just ending my life rather than living this way, it's so fucking difficult, I'm sorry I'm ranting but oh god what did I even do to deserve this,idek how and when did it just get so much worse, the doctors think it's only a couple of months left w me, I wish it was all just a bad dream and I could just wake up and be just back to how I was a year back, idts I can put up w this for longer I'm so fucking weak I can hardly breathe I'm just so sick of being this sick, I wish it all just fucking ends,

hey guys, need some quick advice. my father (62) (aml) and done with two dec+ven cycles. his WBC is around 7+ rn, so not low. i’ve always heard fever = emergency in these patients due to the weak immune system. but is it still that serious if wbc counts are kinda normal?

do we rush to ER every time or can we wait and watch a bit? would really appreciate real experiences 🙏

Hello everyone , is it normal for the HB , WBC and platelets counts to drop low during consolidation phase ?

On April 13 , my brother’s counts are like this

HB is 8.9

WBC : 4000

Platelets :2,97,000

On April 18 , the counts are like

Meaning

HB : 5.7

WBC :1300

Platelet :90,000

We are in the 3rd week of consolidation phase

Sorry but his medical team has proven to not be really on top of being concerned with certain symptoms and reporting them to the appropriate doctors. It’s partially my husband’s non chalant attitude when mentioning these symptoms, but repeatedly I have read things on this group, asked him if he told someone and he says yes, then when I go tell his doctors that I would like some reassurance because I read something that xyz can be bad, they often will be surprised at this information and glad I brought it to their attention. So I feel like I have to check behind whatever he is hearing on this group lol.

He has been going to the hospital twice a week since he got out of the hospital, but he sees a doctor for like 5 mins every two weeks (where I’m sure if I’m not there he says “yeah I’m fine just tired) but I hear him reporting symptoms, at least that I tell him, to the nurses. But he says they just take his vitals and sometimes give him magnesium or fluids.

When he was on venteclax, and had to go in for the shots, the nurses administering them had no idea about leukemia specifically or anything. And they were busy and if he told them a symptom it almost never made it back to his actual doctor’s records.

I'm currently day +2 of SCT and yesterday they put in a feeding tube and it's been nothing but problems so far. It's causing more issues with eating and swallowing than anything, and I just vomited the tube out. It feels like so far it's caused more throat irritation than the mucositis or anything. Is it really necessary or something that I should decline to have from here on out?

Hi everyone,

My dad (68M) was recently diagnosed with Myelodysplastic syndromes (MDS-spectrum disease) after years of low blood counts.

We just received his genetic testing results—- Mutations they found

• ASXL1 (x2)

• U2AF1

• IDH2

• PHF/PHF6

He also has chronic cytopenias (low WBC/ANC and platelets, mild anemia) and mild dysplasia, but no increased blasts (2%)

What we’ve been told so far:

• Not “low-risk” biologically due to mutations

• Not high-risk AML/MDS yet (no blasts, relatively stable counts)

• Disease appears driven by a clonal process rather than reversible causes

A rough estimate for years to live was around 5 years, 😔 but it seemed more like a general population-based estimate

Treatment problem:

Insurance is currently denying a medication because it is labeled as a “leukemia drug,” even though his hematologist says it is appropriate for his MDS and mutation profile. It’s $50k -80k a month

We are currently going through the appeal process…. Any insight on this is also appreciated.

What I’m trying to understand:

• How serious is this mutation combination?

- has anyone else had a similar risk profile who has survived it? This is really what I am interested in hearing. BMT looks like high risk from the stats I read online but I wonder if that’s because they are counting a population of more elderly sick people who drive up the mortality rate

• outside of BMT Any treatments that work well I should know about ?

• How often do insurance appeals succeed for off-label use of leukemia drugs in MDS cases?

Any insight from people familiar with MDS, hematology, or insurance appeals would be really appreciated. We’re trying to understand the real situation beyond the labels.

I’m absolutely broken 😞

16M hi the love of my life told me that she has leukemia and has 10 days left to live and after that there's no guarantee can anyone help please what is this she's my everything she's telling me to promise that I'll forget her but I can never forget her it's a long distance rs and can anyone tell me how serious this is ,can I donate? please dm.

Hello, I’m wondering how everyone pays for their TKI’s for CML? I used to take Imatinib and it was cheap at the cost plus pharmacy, now that I’ve been prescribed Sprycel the copay is like $3500, how are you all paying for this stuff? What am I missing? Thank you

hey, i’m 18 and was diagnosed with ALL in jan 2025. went MRD negative pretty quickly and i’ve done all treatment except transplant.

i’m on maintenance now (CALGB 10403 protocol) and started it in dec 2025.

lately i’ve been getting tired of the meds and my liver enzymes have been going up and down because of them.

just wondering if stopping maintenance early is ever a good idea if you responded well, or if people usually regret it.

would really appreciate honest experiences.

So this is my first post here and I had no idea there was a subreddit for something like this.

I am a 26 year old male who was diagnosed at the age of 2 with ALL which was back in 2002. I went through chemotherapy, radiation therapy, and eventually a bone marrow transplant. In 2007 I was officially put into remission and ever since I've been good. I'm almost 20 years cancer free.

But what this post is about is the feeling of survivors guilt. Yeah I don't know if this is a common thing with cancer patients who survive long term after their treatment. But I've had this feeling for the past 5ish years now. I've always felt like "why did I live and others didn't?" I am grateful to be alive because I have been able to live a decent life making great friends, eating good foods, playing video games, and so much more. But still in the back of my mind something says "you shouldn't be here."

I don't want to sound insensitive because I know there's people here who have lost someone they love because of this stupid god awful disease. But I just feel like I shouldn't be here. I know I should most likely talk to a therapist about this instead of writing a post on Reddit but I just wanted to know if anyone else felt like this.

Hi I am the wife of an ALL survivor. He’s been in remission or as his oncologist says “cured” for over 25 years of his life. He had it as a toddler and went into treatment and was treated for about 8 months and has thankfully never even had a scare.

We have a son who has a Congenital Heart Defect and will eventually need a liver transplant. We started talking today and he is curious about whether he could potentially be a donor for our son. I know blood cancers can be very very strict but we aren’t sure in his case because his blood work doesn’t show markers or even the inkling that he ever even had cancer.

Thank you in advance!

Low Testosterone?

Diagnosed AML Jan 2024 - FLT3-ITD, MECOM, 7q del mutations

SCT Aug 2024

Relapse Feb 2025

2nd SCT Oct 2025

Started experiencing severe fatigue about 2 months ago; transplant doc finally tested testosterone last week. My total testosterone came back mid-range of normal (536), but my SHBG is very high (110), which is binding up most of it. Because of that, my free testosterone is actually low (43), less than half of the bottom range of normal, so effectively have very low usable testosterone despite a normal total level. Has anyone post-transplant dealt with high SHBG and low free testosterone causing severe fatigue? My team is going to have me see an endocrinologist.