r/leukemia

Hi everyone! I’m looking for some input/advice on my current predicament.
I’m almost 10 months post allogeneic STC following AML with no GVHD, off immunosuppression, on maintenance therapy, and started revaccinations. Yay!
With all of that, the promise I made to myself while in the hospital and explicitly told my family was that when I got better, I’m going to travel more. There’s so much of this world I haven’t seen and because I kissed death at the ripe age of 24, I’ve been trying to keep that promise. I was able to go to Italy and Albania in June with no complications or issues which was amazing and a blessing. I now have the opportunity to meet my sister in Brazil next month which would be a birthday present to me. But the obvious risk is traveling to a tropical South American country with the endemic diseases there. I’d be going to Florianopolis in the southern region of the country and potentially Rio as well. I can’t get the yellow fever vaccine bc I’m not 2 years from transplant and it’s a live vaccine so there’s risks that lie there as well as other mosquito borne illnesses.
I met with a travel medicine specialist and she gave me information on how to prevent mosquito bites (spray for clothing, DEET/picardin bug spray, long sleeves and pants to cover skin, fans to keep bugs away, etc.) but she did say that she legally has to say she doesn’t advise that I go to Brazil but understands where I’m at in wanting to go. So where I’m struggling is do I avoid the risks and not go on the trip at all or say f*** it and not let this godforsaken disease take more of my life experiences away? I’d purchase travel insurance and medjet and cover all my bases but I get worried about the idea of having a fever that’s so bad my organs start failing. Idk. Any HELPFUL NOT CONDESCENDING advice is appreciated. Thank you!

My mom was diagnosed with CML about two years ago. She initially started treatment with a TKI, Tasigna (nilotinib). After some blood work, we were told that she was responding well to treatment and heading toward remission. However, the very next day, she was hospitalized after experiencing an SVT episode. We were then told that her CML had progressed to AML and that the doctors wanted to start aggressive chemotherapy. We decided not to pursue the aggressive chemotherapy at that time, and her doctor put her back on Tasigna.
Her blast numbers initially went down, but she then developed severe bone pain. It became so bad that she could barely stand, walk, bathe, or do basic daily activities. She also lost approximately 60 pounds in just three months. Since then, it has been an uphill battle.
I eventually switched her to a different doctor, who started her on a different-generation TKI. Thankfully, the new medication significantly improved her bone pain, and for a while things seemed to be going in a better direction.
However, she has now been requiring blood and platelet transfusions almost every week because her hemoglobin keeps dropping to around 6 and her platelets to around 8.
This week has been especially stressful and confusing. She underwent her fourth bone marrow biopsy, and initially we were told that they didn't see anything concerning and that the biopsy appeared to show remission. Then an attending doctor told her that her blast count was 54%. Later, another doctor came in and said the biopsy results indicated remission.
I am completely confused and terrified because those two things seem like they cannot both be true. My mom is also experiencing more pain than ever right now.
Has anyone else gone through something similar with CML progressing or possibly transforming to AML? Can blast counts and biopsy results be this different, or is there something specific we should be asking her doctors to clarify?
I’m just looking for anyone who has experienced something similar and can help us understand what questions we should be asking. We are scared, overwhelmed, and trying to advocate for my mom as best as we can.

My 66-year-old father was diagnosed with AML on August 6. We were still awaiting the final subtype/molecular classification when he passed away on August 15. From diagnosis to his death was just 9 days. He had hypertension, was diabetic (no insulin, controlled through meds), and had a minor heart issue in 2004, but was cleared for chemo by the cardiologist.

His WBC was 44k at the time of diagnosis. He was given hydroxyurea, and his WBC had fallen to around 29k the day before treatment and may have been below 25k by the time treatment started. His platelets were around 18–19k before treatment, and he received a platelet transfusion after chemo. He also received medication for TLS/uric-acid prophylaxis.

He was admitted to start azacitidine + venetoclax (Aza-Ven). He was stable when admitted, apart from significant anxiety.

On day 1, the azacitidine infusion ran for roughly half an hour starting around 12:45 PM, and he took venetoclax at around 4 PM.

Within about 6 hours, he started deteriorating.

One of the most striking symptoms was extreme chills and violent shivering. The hospital room itself was already very warm, but he felt so intensely cold that we had to continuously hold a handheld heater close to him. He was still shivering despite that. He also developed nausea, severe restlessness, repeated bowel movements, and increasingly rapid/laboured breathing.

At one point he collapsed and briefly lost consciousness in the bathroom. He regained consciousness within seconds and was still communicating with us afterward.

Over the next couple of hours, his condition worsened dramatically. He became increasingly breathless and eventually suffered a cardiac arrest. CPR achieved ROSC and he was transferred to the ICU, but he later had another arrest/serious rhythm deterioration requiring shocks.

The doctors diagnosed clinical tumor lysis syndrome (TLS). His potassium was reportedly >9 mmol/L, his kidneys failed, and he developed multiorgan failure. He never regained consciousness after the initial arrest.

We ultimately withdrew life support after the ICU team told us that his chances of survival were extremely low and that meaningful neurological recovery, even if he survived, was unlikely.

His doctor told us that he has seen laboratory TLS during leukemia treatment but had personally never encountered a case of clinical TLS like this, and described what happened as an exceptionally rare event.

What is difficult for us to comprehend is the speed. He went from starting his first day of Aza-Ven to severe physiological deterioration and cardiac arrest within hours.

I understand that TLS is a known risk with venetoclax because rapid leukemia-cell death can release potassium and other intracellular contents into the bloodstream. But I am trying to understand how rare severe or fatal clinical TLS with Aza-Ven in AML actually is.

Has anyone here — patients, caregivers, hematologists/oncologists, nurses, etc. — experienced or witnessed severe clinical TLS after Aza-Ven, particularly cycle 1/day 1 and within only a few hours of treatment?

I'm not looking to blame his doctors or treatment team. I'm mainly trying to understand what happened to my father, how something this catastrophic could happen so rapidly, and whether anyone else has seen a similar case.

We thought we had at least some time ahead of us — hopefully months or longer, depending on his response to treatment. I never imagined that we would lose him on the first day of treatment to TLS.

None of us (on-duty doctor, nurses) understood that TLS was developing while these symptoms were happening. He was being treated in a regular hospital room rather than an ICU, and the deterioration happened incredibly quickly. By the time we understood how critically ill he was, he had suffered a cardiac arrest. He was completely fine until 2 hours before this death, i.e till 4.30 hours after he took venetoclax.

It has been incredibly difficult to process going from an AML diagnosis and planning his treatment to losing him only nine days later.

Context: 50mg ven, this was in India at one of the best hospitals. He was also asked to stop his blood thinners a few days prior to treatment.

Just need to clarify answers because I got another Hickman yesterday and my crp went from 110 to 130 and I’m pretty sure a surgical procedure like that can cause crp to increase as inflammation will obviously form

Hello all,

So recently diagnosed with aml. Im 44. We have a 5 year old.

Really torn on what to do her. We have very little in the way of family support.

Induction chemo they are hoping 5 days + 28 outpatient in a hotel near mayo.

My question. Can I do that 28 days outpatient by myself, or should I count on my wife and kid being with me the whole time? We were gonna have my wife commute two hours a day during school, but beginning to think that's a terrible idea.

Any help?

My father,58, was diagnosed with MPAL in feb 2026.

Started on Vincristine and steroids. Reached 1% blast from 34%. On Dasatanib since day 1. Reached mrd negative post administration of Inotuzumab. Been suffering from Diabetes, hypertension & thyroid since 10years and took regular meds. We were told to either go for BMT or on maintenance therapy. Have haplo match with both of sons. Stats presented by doctors- 15% chance of Fatality during BMT given his comorbidities. 40% chance of relapse post BMT. No surety about the timeline. Books tell BMT as the only curative treatment hence doctors say BMT is the best shot.

We took the safer route of maintenance therapy as BMT had immediate risk. Currently only 1 dose/month of Vincristine. Weekly- Methotrexate. Daily -Dasatanib, mercaptopurine. Along with few other antifungal and drugs for existing comorbidities.

Idk if we took the right decision or we should have opted for BMT.

Hey everyone,

I was wondering if there is someone who is about to go through a stem cell transplant soon. I’m starting mine in September, and I thought it would be cool to chat with another person who is going through a transplant with me. We can check in on each other, play video games, even FaceTime to see how each of us are doing. Just a way to have a buddy who is going through the bull shit with you.

I’m a 25 year old Father of a 2 year old from the United States diagnosed with AML CBFB-MYH11. I’m married to my college sweetheart. I love football, hunting, fishing, cooking, grilling/BBQing, watching MMA, and board games!

I hope to hear from y’all soon!

Hi there. I believe this is my first time posting on Reddit. Hopefully I don't mess anything up.

About me.

Initial diagnosis 9/2022 B-ALL ph+
Remission 10/22o Stem Cell (allo 100% non) transplant 1/23 Relapse 10/25 56 years old now

As mentioned above, I had relapsed last October. It was bad, OCU on life support for a couple of weeks. It was really tough...but yesterday was my last treatment. My third DLI. I will have a spinal puncture with chemo every two months.

》My question to those who have relapsed and survived... do you know the success rate?

I'm really worried. I am still really thin and weak and worried that I won't be able to fight. I have OCD and like to have my ducks in a row. Neat centered and in a row. Lol.

Thank you very much

S.

My little sister is 26 and was admitted two weeks ago after being diagnosed with AML. Everything has moved so quickly from the day of her diagnosis to now, and I feel like I’m left with so many questions. She’s currently on day 7 of 7+3+GO, and her initial bone marrow biopsy confirmed AML with inv(16), which I understand is considered a favorable-risk subtype. However, after reading more about it, I’m confused about the role of stem cell transplant and whether it’s necessary to achieve a cure. Is it possible for her to achieve remission and potentially be cured with chemotherapy alone? At what point would a transplant be recommended, and should I be pushing for one now?

Today marks 9 years post BMT! Currently 46 M, battled AML and had an anonymous donor. Today on no meds, no GVHD. Everyday leukemia becomes more and more a footnote in my life. Truly blessed and eternally grateful for my donor and care team. Going with my wife for a nice dinner tonight, life is good. For all of you in the battle, things can get better!

Hello (M29) long time lurker of the page. I was diagnosed in November 2023 very suddenly when I thought I just had a cold. I generally come to the page to try and quell some anxieties around this whole process.

In the first diagnosed I did a consolidation treatment very aggressive but went into the transplant still with minimal detection and had nearly two good years out of the transplant. I did have a whole host of GVHD mostly physical symptoms like cramping and fatigue. On the second transplant I did an even more aggressive consolidation and sprung for TBI. Going into the transplant with completely zero detection.

I guess now not to my surprise I relapsed in September 2025 and had my second transplant in February. After the first transplant even with the chronic GVHD I felt invincible like I could conquer anything until I got the gut put on a random cbc panel.

I’m posting really looking for any guidance on how to navigate anxiety. For what it’s worth I’m extremely fit to most surprise after the transplant doing lots of weightlifting six days a week a lot of hiking and cycling as well. I just absolutely never feel like it’s enough. Regardless of if I’m eating good, lifting heavy, recovering well, and symptomless. The second I get a stuffy nose or my throat is a little sore or I feel like I need to take a nap it sends me into a complete panic waiting for the other shoe to drop. I keep myself busy almost all of the time to avoid managing the mental load or feeling like I’m going to miss out. I just feel like I’m not living in my body. Any suggestions would be helpful thank you.

I’m M in my late 40’s and got my SCT 2.5 years ago in 🇺🇸. My donor wrote to me first and we have been exchanging messages through a 3rd party as we weren’t allowed to talk directly until 2 years after transplant. At the 2 year mark, we exchanged numbers and found out he was German. Jumped on the first ✈️ available and met him for lunch in his town. It felt so weird that someone I’ve never met before was responsible for me being alive. When we initially met, we shook hands and I asked him if I could hug him and he said of course. It was easiest the most emotional hug I’ve ever experienced. We had lunch, we shared stories, we bonded. Which brings me to a very important question… he told me that in Germany, hospitals promote getting tested to become a donor everywhere. Why can’t we do the same in 🇺🇸? Example i used to donate blood before I got sick, but not once they told me there was an option to do a swab test to potentially become a SCT donor. 🤔

My father (57) got diagnosed with AML M1 last year Aug 2025. After the 1st chemotherapy combination of decitabine + venetoclax he is in deep remmission till now

6 genetic mutations got detected in with 4 know clinical significance and 2 unknown significance

4 known significance

Dnmt3a

Phf6

IDH2

asxl1

2 unknown significance (VUS)

Runx1

IDH2

We took last bone marrow biopsy 2 weeks before and results showed all 4 known significance are not detected and less than 1% but the 2 unknown significance are same as like it from the start. It still remains with 50% both

Even MRD is negative and Fish test is also negative

Now doctor has advised either to increase the dose of decitabine or opt for Bone marrow Transplant because of the unknown significance still remains with same percentage

Me and my mom both are confused either to increas the dose or continue with the existing chemotherapy decitabine (38mg) 5 days + venetoclax 14 days

Also, for the past 10 months he is very active and no side effects. Even after every chemotherapy recovery is also good . Currently he is very normal as how he used to be 2 years back

Are those unknown significance really a threat for relapse or these mutations are there in his DNA from birth?

Hello everyone,

Some good news, I am back to work after a year! I (33f) got diagnosed with aml last year in August, after having chemo and being currently on maintenance, I am able to start working again. I am not happy that I have to work dont get me wrong but at least I am back to normal. I started going to the gym also. I still have body aches, sleeping issues, nausea and trouble with the maintenance pills, but my depression has been improving after I started getting support and medication. I still don’t like my hair being short but it is growing. Things are not bad as I thought it would. I still dont know how I got lucky to survive this and what I am supposed to this luck with while people are still going through chemo and cancer and pain but I am praying for all of us everyday.

Hello everyone! My mom (Female 56) was diagnosed with AML last june. I was a match for her stem cell transplant so that procedure happened late last september.

Cancer is not easy. I’m writing this to tell everyone that healing is not linear nor upwards all the time. I’ve read time and time again that after the 100 days mark or even the one year post transplant mark that many people have gone back to their normal lives or resumed all activities. Although that is amazing, it set a misconception in my mind that my mom should be progressing at a certain pace and would scare me when she wasn’t. Although she is in remission and slowly recovering, she has had lots of setbacks including TA-TMA.

This post isn’t to fear monger but just to say that everybody is different and recovery isn’t that simple. There will be hard moments and relieving moments. Just because you or your loved one isn’t recovering at the pace that most people do, does not mean it’s not possible. It’s easy to forget about your progress because you’re always looking towards the next step, but remember to also be proud of yourself for how far you’ve come.

My wife age 63 is a AML patient and undergone all possible chemotherapy treatments during last nine months however it relapsed. Now we are using new drug revumenib , I would like to know whether anyone has experienced it and what was the result

Well, I take sertraline and was diagnosed with GAD 7 months ago. The problem is, I really don't know, but this combination of things is driving me crazy, people, that's a fact. I truly feel that leukemia has completely destroyed me. This terrible disease has killed the old me. Another thing is that I was taking anti-seizure pills to avoid any symptoms from Blinatumomab, and I noticed that the anxieties worsened, leading to rapid involuntary movements. I'm sorry to say this, but I really don't want to look at my doctor and see that they treat this as normal. I'm becoming increasingly depressed.

hi all, my dad (52) was diagnosed with AML in January 2026 and is now day +100 post SCT. He is okay, ups and downs. GvHD hasn’t been awful (mainly bladder pain and some rashes on his face) and he is heading back to work in a few weeks thanks to a long term disability issue. My biggest issue now is i just can’t stop worrying. I know +100 days out isn’t the most in the world, I just can’t tell if I’m ever going to be able to relax again. His team is great but have always had a slightly vague and glass half full attitude, in most other cases I appreciate it, I just hate feeling like I will spend the rest of my life waiting for the shoe to drop. celebrating day 100 this weekend was amazing, but everything feels like its going to jinx it. Does the worrying subside once he gets all his vaccines? Year 5? Ever?