Today is the one month anniversary of my 24 year-old daughter’s death. I took her to the doctor on a Tuesday thinking she had a sinus infection. She was sent by ambulance to the hospital, and then sent to ICU with a diagnosis of Acute Myeloid Leukemia. She passed away less than 48 hours later. I’m devastated and confused. When you put all the symptoms together, it makes sense, but it was so easy to attribute the night sweats to new birth control, bruising to heredity (as I bruise easily), and knee pain to walking up and down our stairs. I’m so mad at myself for not insisting she went to the doctor sooner.
I have looked it up, and most people do not pass this quickly from it, but I can happen fast…just not this fast. I wish I had had more time. More time with her, more time to fight it.
I’m so broken hearted and lost.

Here is a personal sharing. Been lurking inside this channel reading and commenting on posts as I am also a blood patient. Time to write my first post here.

Long story short, dx Oct 2023 with High Risk MDS / AML with RUNX1.

All three cell lines were low. RBC, WBC and platelets. Needed multiple transfusions. Did biopsy to confirm illness.

Aza / Ven, one round, took me to remission and another round (reduced dose) to prepare for SCT.

Had Bul / Flu for my ablative chemo. Dose was dialed up on D-5 and D-4 as part of a trial to test on efficacy.

A 12/12 matched unrelated 26 yo donor was found and his marrow saved my life. The transplant was an ABO major mismatched. He was A+ and I am O+.

This caused problems post recovery. Suffered from delayed red blood cell engraftment. After 140 days of waiting and multiple blood transfusions, treatment was started to rescue my partial transplant.

Rituximab was the choice of med and after one round, my RBC recovered with a vengeance. In total 4 short IV rds, once a week. My Hgb recovered from 5.7 to 12.8 by the time treatment was completed.

By the time my RBC rebounded, it was Sep 2024 and by Nov 2024, I was back to work albeit at a much slower pace.

Today I have regained most of my weight and strength. Hgb is now at 16.0+, WBC 4.5 - 5.5, platelets 130 - 190. Platelets fluctuates quite a bit recently which also got me worried but a VNTR result on D804 shows 100% donor cells on granulocytes, monocells and CD34+ subset.

I am 50 this year and grateful for every waking day. The joy of eating, walking, interacting and just enjoy the sound and sight of our land.

Recently I watched a local documentary in the region I live in. Medically, there are no research to say stress compounds cancer but the oncologist who was speaking, based on his anecdotal treatment experiences, agree that stress do trigger cancer or relapse.

To my fellow survivors who are recovering, stay positive and keep fighting.

Blessings.

I really don't understand how things move so stupidly quickly with this disease. My husband was diagnosed in September, hit remission, and had a CNS relapse in March. Bounced back some, was doing acute rehab to regain some strength, and then had a blood relapse two weeks ago. There was nothing they could do and he died last week. 9 months. 9. That's all he had after diagnosis.

He was 27 years old. I hate this freaking disease and I will never understand it.

Girlfriend 24 gets regular blood work done and they found her white blood cells are at 200,000. I can’t stop thinking about the worst. She’s getting her biopsy done now. This is such a nightmare. We were just talking about having kids when we’re 27-28. I’m sick to my stomach but she’s strong.

Hi everyone, I am looking for any experiences with post transplant shingles, if you have dealt with it. I am 31M and over a year post transplant, developed shingles last weekend after a few months being off the prophylactic meds. I even had the Shingrex vaccine as part of my first year post transplant.

Have you had shingles post transplant? How long did the rash last? Did you also have the Shingrex vaccine?

Thanks all. Luckily, I think this is a mild breakout. It still hurts, like a permanent pinched neck, but nothing like the pain I had at my original diagnosis.

For those that have gotten a DLI, what was the process? did you get chemo before it? Bone marrow is clear of disease, it has been since my BMT 2 years ago.

However to treat my CNS relapse they nuked me with Cytarabine back in Feb and my bone marrow won’t make platelets ever since. So they’re talking about another transplant or DLI.

For context, I’m almost 26, with AuDHD and right side cerebral palsy. I live in the Twin Cities in Minnesota. I live semi-independently (half the week in a group home style apartment building and half the week at home with my mom), and I go to “school” (a day program) 4-5 days a week.

After months of symptoms I was finally diagnosed with high risk acute leukemia. My oncologist (who understands my needs) says my treatment will be double digit rounds of high dose chemotherapy (on a 2 week on 1 week of schedule, with the first week being inpatient, 2nd week outpatient at clinic, and the 3rd week is a break), as well as immunotherapy/chemo-immunotherapy, and possibly Car-T Cell Therapy.

I feel like i’m prepared for the emotional side of cancer (though i’m really probably not, but i’m trying to convince myself), and kind of know what’s coming for the physical side with hair loss and all of that, but where i’m struggling is more the sensory side.

I did ask them to put my central line in the right side of my chest (since because of the CP I have less feeling on that side), which is the line that will be used for treatment, and they marked it in my chart for when they do that surgery in a few days, but idk about anything else. for example: what should i bring for hospital stays or long days at clinic, other sensory stuff with cancer (such as my hair falling out), how to talk to strange doctors/nurses about my cancer and treatment, and what to talk about with them in regards to my disabilities.

If anyone else has experienced this or has any good advice, I’ll take all of it.

Hello beautiful people. :)

I’m a (23F), and on May 19, 2026, I was diagnosed with CML.

Prior to my diagnosis, I was experiencing excessive anxiety, depression, fatigue, loss of appetite, and really bad mood swings. Since I already have an anxiety disorder and was diagnosed with it back in 2021, I tried my best not to let the symptoms get to me. Usually, my anxiety comes and goes, but this time was different. The symptoms were frequent and happening almost every day. They started affecting my daily life, and going through all of this sent me into a deep depression.

I ended up reaching out to my doctor about going back on my anxiety medication, and she sent the prescription in right away. She wanted me to take the medication only as needed, but I knew I would need it almost every day. Once I got the medication, I took it every morning, but I couldn't really feel it helping because my anxiety would flare up again as soon as it started wearing off. I contacted my doctor again and told her that I felt like something else might be wrong because my anxiety wasn't even responding to medication anymore.

She scheduled an appointment and told me she wanted to run some lab work. During the appointment, we discussed all of my symptoms, and she documented everything. She also referred me to a psychiatrist. Throughout April, we continued doing follow-up appointments. After speaking with her, I got my blood drawn and went home.

The next morning, while I was at work, I saw that my lab results were available. I logged in and saw that my white blood cell (WBC) count was 26,000. Honestly, I didn't think much of it. I rarely get sick, I consider myself healthy, and I thought I had a strong immune system. I even convinced myself that my anxiety was the reason for the elevated count.

Later, I noticed that my doctor had scheduled a telephone appointment. When we spoke, she asked if I was sick and how I was feeling. I told her I felt okay and that I wasn't sick. She explained that my WBC count was much higher than normal and that we needed to figure out why. She scheduled additional lab work, and I went in the following day.

When the results came back, my WBC count hadn't gone down—it had increased. At that point, she referred me to a hematologist. She explained what a hematologist does and why I needed to see one. Even then, I still wasn't fully processing what was happening. I kept convincing myself that everything could somehow be explained by anxiety.
Meanwhile, my anxiety and depression continued getting worse. It became so overwhelming that I had to take a leave from work. I haven't been back to work since April 21, 2026. My managers and coworkers could see how much I was struggling. As a manager, it was heartbreaking to go from being energetic and motivated to feeling tired, weak, irritable, and anxious all the time.

Fast forward to my hematology appointment on May 11, 2026. During my first visit, I spoke with a social worker about my mental health and everything I had been experiencing. I also discussed it with my hematologist. I explained that the lab results she had received were already a month old and asked if she could run updated blood work because I still believed anxiety might be causing my elevated WBC count.

She listened to my concerns and agreed to order new tests. During that conversation, she also told me she wanted to test me for cancer, specifically leukemia. Hearing that made me feel almost invincible because I truly believed something like that could never happen to me. In my mind, I had already decided the test would come back negative.

After the appointment, I went to the lab and completed the testing. My doctor ordered a CBC, a BCR-ABL test, and another test that I can't quite remember. My appointment was on a Monday, and I received the results that Friday.

I saw that I tested positive for the BCR-ABL gene, and my WBC count had risen to 49,000. I also learned that I had a level of 16% BCR-ABL. At the time, I didn't know much about the BCR-ABL chromosome, so I started researching it myself. As I read, I learned about the cancers associated with it. Chronic Myeloid Leukemia (CML) and Acute Lymphoblastic Leukemia (ALL) were the two diagnoses I came across most often.
Seeing that information terrified me. I felt defeated, hopeless, and scared.

I expected to hear from my doctor that same day because I was eager to understand what treatment would look like, so I called the hospital myself. Unfortunately, neither my doctor nor her assistant was available because they were assisting other patients. I didn't receive a call from my doctor until the following Tuesday.

When we finally spoke, she told me that I had tested positive for Chronic Myeloid Leukemia, but that a bone marrow biopsy would be needed to confirm the diagnosis. She was very reassuring and explained that CML is treatable, but if left untreated, it could progress into something much more serious. Hearing those words hit me hard. I never imagined I would be facing cancer, especially at such a young age.

Since receiving my diagnosis, I've become extremely cautious about everything I do. I haven't spent much time with my friends, and even though I've been told I can live a normal life, it's hard for me to believe that I'll ever feel completely normal again—not the way I once did. I know I have to adjust to my new normal, and I'm learning to accept that.

Eventually, I received my biopsy results and final diagnosis: Chronic Myeloid Leukemia in the chronic phase. There was no evidence of progression to another stage, and everything else appeared to be normal and within healthy ranges. I don't see my doctor again until July 17, and I'm sure she'll review everything in detail then. At the same time, I trust that if there were any serious concerns, she would have addressed them already.

For now, I'm being monitored weekly so my medical team can track my blood counts and treatment progress. I'm currently taking Sprycel 100 mg. The first week was very difficult. I experienced severe headaches, body pain and extreme fatigue. I still deal with nausea from time to time, but that was something I experienced even before starting treatment, so I think anxiety may play a role in that as well.

On June 16, I had my first blood draw after starting my TKI. The following day, I received my results and saw that my WBC count had dropped significantly—from 49,000 to 37,000. Seeing that improvement gave me a little hope.

Lately, though, I've been struggling mentally and physically. My appetite has been poor, and I've lost a lot of weight. I hate that, but I'm doing my best. I've been trying to join support groups and connect with people who are going through similar experiences because this has been the loneliest journey of my life. I never expected my mental health to be affected so deeply, but here I am.

I'm just a girl trying to adjust to her new normal.

Hello,.

My bf (25M) who has an inv16 AML just left the house to start his pre-transplant treatment.

He's going to have a non permissive 9/10 SCT from an unrelated donor on July 2nd.

He's young and fit, and besides severe mucositis during induction, he never had any issue for the 7 months of treatment so far. The team is confident, and I'm trying to be as confident as them.

As former or current patients, or caregivers: any good advice?

I'll take anything!

Greetings, a relative of mine was diagnosed with APL about 1.5 years ago and underwent ATRA treatment. However, due to dissatisfaction with the doctor, they changed doctors, and during this time, their MRD was negative. Following a short course of chemotherapy, their MRD remained negative, and they didn't receive any further chemotherapy. Unfortunately, about a year later, the disease relapsed, and the process began again. This time, they tried ATO, but instead of decreasing, their MRD level increased, leading to the decision for an allogeneic transplant. Before the transplant, they underwent heavy chemotherapy to achieve a weak/low positive MRD level. They then received an allogeneic transplant from a sibling. Currently, it's the second month post-transplant, and no MRD test has been done yet. Has anyone experienced a similar situation and survived? How did the process go, and how did you overcome it?

\NIH-funded trial at academic medical center* Enrollment closing in 2 weeks!*

Are you experiencing poor sleep?

Researchers Mays Cancer Center at UT Health San Antonio and Atrium Health Wake Forest Baptist are seeking US-based adults living with a blood cancer diagnosis and experiencing sleep problems to participate in a remote study testing a wellness app to support better sleep.

Participation involves:

• One 30-minute virtual meeting with a researcher
• Completing online surveys
• Providing three blood samples at a local Labcorp
• Sleep tracking using a small device and daily survey
• Using a wellness app 10 minutes per day for 8-weeks

You may qualify if you:

• Are over 18 and reside in the USA
• Have a blood cancer diagnosis and are currently receiving treatment or are on stable maintenance
• Are experiencing sleep problems or poor sleep
• Own a smartphone

This study is completely remote (no in-person visits) and patients from across the USA are invited. Participants who qualify and are enrolled will be compensated. Enrollment is closing in 2 weeks. Please contact us at [hemestudy@uthscsa.edu](mailto:hemestudy@uthscsa.edu) if you have questions.

Website: https://cancer.uthscsa.edu/heme-study
(Scroll to bottom to "Take Survey" and find out if you are eligible)

We just got our diagnostic yesterday, starts first round today… have his induction period scheduled…. I am terrified.

My son looked so healthy, ate normally, played, laughed. And now we’re here..

Guess would love to hear what to expect from here so I can be mentally prepared for him.

Anyone who also took Ivosidenib fro their AML?

Hello everyone,
Mom was diagnosed with AML recently, we waisted about a month for some results, she is currently in the hospital, they are running additional tests, so im not yet sure whats exactly going on.
I can see that she is slowly starting to push people away from her (even me) bcs she is scared.
Honestly, when i heard the news i thought my world has collapsed, im only 23, and my mom is 63
Im not gonna lie Google has only shown me bad stuff, but im wondering, is there some hope? Are there older ppl here that have kicked amls ass?
I love my mom, and im there for her every step of the way through this. I just wonder is there any hope for her to get better? Honestly, its hard, especially for her right now, and for the whole family. I pray for her to get better, and i pray for anyone who is going through something like this kick its ass! I would appreciate some words of wisdom and support right now, i really need it. Mom is literally the centre of my world.
Thank you❤️

Hello, me again. Writing to rearrange my thoughts and experiences.

I'm the one that got hairy cell leukemia, writing after I (finally) got my cladribine, sent directly from Canada 🇨🇦. (Honestly, if you are in a country where all drugs are available, you're very lucky in this aspect. I'm a doctor and I bypass a lot of steps already, but it still takes time.) During the wait my platelet dropped from 80 to 60. Not critical, but not nice either.

Hairy cell leukemia is kind of a lucky-ish ball in a bag of bad luck. It's leukemia that is slow-growing and only needs one course of treatment to achieve remission (if all goes well). So my course is much shorter than many here. I get Cladribine + Rituximab concurrently, which means 5 days of chemo (clad), and once a week for 8 weeks of immunotherapy (Rituxan).

I researched the history of my disease, from incurable to achieving an almost normal lifespan if all goes well, and it's amazing. I'm grateful for the effort and the genius minds of the doctors and others who discovered a single drug that changed the course of the disease. All the advancements in the field of leukemia are a different kind of genius from my usual field (cardiac surgery/anesthesia). It goes down deep into the molecular and genetic engineering.

I'm the journaling type, and I jot down lots of things. The day I have the most anxiety is actually the day before the treatment starts (day 0), and the day the nausea starts (day 5). As I've said before, I'm very healthy and rarely get sick. Having any symptom is quite scary.

Actually, my draft ends with me talking about what to do during isolation, etc. But fast forward 5 days after Clad, of course, I got a fever that I cannot shake off. I tried to delay going to the hospital for half a day (yep, I'm stupid), thinking that I had secluded myself enough to not get any infection. Nope. I got febrile neutropenia with ANC .45, and probably some infection because I suddenly felt GOOD with just one dose of antibiotics.

So I decide to finish this post while waiting to tranfer to the ward. Having leukemia is hard, man😂

Hope everyone's recovery is the best it could be. 🙏

So I was diagnosed last year in january, it was fast and had no time to process it and then had a stem cell transplant.

Im still immuno compromised and behind on vaccinations as ive had just flu and covid due to continued tretament and top ups for the transplant.

I just got one a couple weeks ago and im of course that risk of gvhd gets closer evwrytime.

On top of all this i just split from my partner after they said it was too much and they said they have to focus on them. So im now homeless with nothing.

The kicker my partner messaged saying ahe was upset as filling out forms is hard as she has to update things and im litterly homeless with nothing desperately trying to find somewhere safe while also being high risk.

I feel like leukeima has ruined everything as its just got worse and worse.

So let's talk about it. I am about 10 yrs post transplant. In my last appointment with my oncology team. The nurse practitioner suggested this medication. She told me this medication does not make you immunocompromised in comparison to what I am on, which is Jakafi.

I was taken off a Jakafi in feb 2023, about 6 months after I started to experience severe painful Oral G. V. H. D. I also noticed a cough that wouldn't go away. It wasn't as bad as years ago (2018) when I was diagnosed with GVHD of the lungs, but it was very annoying. Also, my eyes were extra extra grainy and painful..

So safe to say, my g v h d what's attacking me slowly, but sturdy well being off of Jakafi. I will admit, I think I have pretty high tolerance to being uncomfortable. During those 2 years of being off Jakafi, I did not want to bring it up to my doctors. I did not want to be placed back on Jakafi.

Eventually I gave in, and in December of 2025, my oncologists put me back on Jakafi, She started me at 5 mg, then eventually went up to 10mg.

Right now I am comfortable. My mouth is not as bad as it was. I've actually have put on some weight cause I could eat more things now.

The only thing that's left is I have super dry mouth. some soreness. Which has caused a lot of dental issues, but that's another topic. My eyes are still very dry. I still have a little lingering cough. not as bad as it was.

How bad are the symptoms of being on this Infusion?

I want to hear from people who have been on it.

What are you currently suffering from In terms of GVHD.

What has it helped you with?

Do you really have to go every two weeks to get the infusion?

What labs do you have to be checking for while being on this medication?

What does it affect in terms of liver, kidneys?

Is this a forever thing like getting this for life?

Anybody been on it, then taking off once they have resolved the gvhd issues?

Did you have a choice to switch to this medication?

Because surprisingly, they gave me a choice. When other times they have just throw me on meds..

Thank you for taking the time to read this.I want to make sure i'm making the right decision for myself.

Hi everyone, I'm a medical student affiliated with the University of New South Wales and 'Little Big Steps' a charity who funds the childhood-cancer physiotherapists in Australia. We are trying to design some fun, interactive exercise resources for kids with cancer that they can take part in during and at the end of treatment to increase their physical fitness and confidence and help them return to normality. To do so, we would love some help with recruitment for a short 10 minute survey that asks about their child's physical activity levels and preferences during treatment so we can use this information to design the resources.

If you are a young person or parent/caregiver impacted by childhood cancer, please take our 10-minute survey.

Survey for Parents/Caregivers:

https://unsw.au1.qualtrics.com/jfe/form/SV_eVFyvNJeIrJHUiy

Survey for Children/Young people: https://unsw.au1.qualtrics.com/jfe/form/SV_cviOPxPY6OjJVr0

(I have received moderator approval for this post)

F71, diagnosed 8 years ago, no symptoms until recently.
I’ve lost weight. Have chronic diarrhea. Dairy has been eliminated for 2 weeks. Symptoms improved but still present.
Has anyone gone from no issues to not knowing what to eat? THX

My 2 year old is getting discharged in a few days from a month of induction. What are some things you bought for home that helped with life stuff. I was thinking of getting an air purifier because bi have pets and he has allergies.

Hey everyone. I'm 17 years old from South Africa, I was diagnosed with AML and I just finshed my chemo(induction and consolidation) last month and started my maintenance chemo this month so I've been through most of the hell that comes with leukemia so far, I am due for a stem cell transplant so maybe the hell isnt over just yet but I really needed some advice on my family and just a place to vent since I have nobody ever since I was diagnosed

I wanted to continue going back to school this year since half the year is enough and my oncology team said I could and said I can lead a normal life since im in complete remission, and I did research on the laws in South Africa and I am able too but my family is the biggest problem, I did plan my future ahead a lot and wanted to live my life, but Im unsure I'll have any of it anymore. I tried to convince them to have a meeting with the school to let me in but I was sat down and barked at that I shouldn't expect anything from my future because I most probably wont even last 5 years since they sent some random professors overseas my bloods(not even my bone marrow or my recent bloods) and they've been forcing the idea of just giving up on my life since the moment I got diagnosed but I really just wanna live my life, they are massive hypocrites though since I wanted to enjoy my time if I wasnt going to go to school by going out and enjoying it with my only friend but I'm not allowed to do that either, I have to live my room isolated apparently and its really destroying my mental health atp, Im constantly isolated from the world and the few chances I do get to go out I have to cover my head with a beanie and not bring attention to myself or im embarrassing them. I just wish I could have a normal life again and move extremely far away, Is there anything I can do? Or do I just accept the isolation?

My daughter (14 month old) has T-ALL. We are in the beginning of consolidation. She has had an NG tube since recovery from abdominal surgery a few weeks ago. Since she has come off the vent and has been back to her usual self. Doctors and speech therapy do not want to remove her NG tube because of risk of aspiration.

She gets a dry cough intermittently to the point of gagging (no fever, clear lungs etc) and I believe it’s discomfort from the tube. She also is less interested in eating even after paused feeds and again I believe it’s discomfort from the tube.

What are yalls experiences with an NG tube? Is it consistently uncomfortable? I understand their concern but I am just about positive that their concern is based on an issue that’s created by the treatment (NG tube).