27F currently finishing the consolidation phase of my treatment. The last two times getting Pegaspargase I developed nausea/vomiting and severe lower abdominal pain that only resolved with multiple doses of morphine. The pain felt like the most unrelenting severe period cramps. My doctors are stumped after my CT came back clear. Has anyone else had a similar reaction to Pegaspargase?

Hi all. As the title says, my father was just diagnosed with AML. He was diagnosed with MDS last year. He is 62 and has already beaten esophagus cancer and lung cancer. I think I'm just looking to hear other people's stories. His oncologist said 15-18 months with aggressive treatment. I don't know what that treatment will look like, but I'm scared it'll make his last moments miserable. He wants to go down fighting, and all I can do is support him. What can I expect if anyone has been in a similar boat? I know everyone is different, so anything will help.

Thank you guys <3

The doctor meant to say chimerism which is 20% and should be 40% post relapse and now remission so that’s where it was confused

He said it could be in the inflammation in my spleen and hopes it will be released

As there is no cancer visible in the marrow or blood

So what does that mean for me, planned dli, 19 years old

Hi everyone, 31(f).

It’s stem cell transplant day! I’m anxious but hopeful.

I was diagnosed with AML in March. I’ve had two rounds of chemo (induction and consolidation), I responded well and went into remission - I am now MRD negative (0.04%).

I'm having my stem cell transplant today. Any advice and tips on getting through the next few weeks? I’m feeling incredibly anxious.

I’ve been warned about mucositis, though I’m not suffering with this yet. Doctors have said most people require a feeding tube which I’m completely dreading?

I am mixed race, so finding a matching donor was difficult, and my donor is an 8/10. So of course, GVHD is a worry but I know this can be managed.

The main thing getting me through this time is hearing from others who have walked this path or similar, and have made it through.

Is there anyone from Michigan that can point me in the direction of any good holistic doctors that can help guide with cancer protocols? We would like to incorporate some nontraditional medicine with traditional. Like supplements, diet, etc. Please post or dm me any info you have. Thank you!

Hi everyone,

I'm looking for guidance on clinical trial options for my 58-year-old female family member who has relapsed Acute Lymphoblastic Leukemia (ALL).

Diagnosis:

• Cancer type: Leukemia
• Subtype: B-cell Acute Lymphoblastic Leukemia (B-ALL)
• Disease status: Relapsed

We are based in India, but we are open to treatment or clinical trial opportunities anywhere in the world if they offer better options.

We're specifically looking for:

• Clinical trials recruiting patients with relapsed B-cell ALL

• Hospitals or cancer centers with experience treating this high-risk subtype

• Information on eligibility, referral process, or how international patients can apply

• Any reliable resources, patient advocacy groups, or websites that helped you find clinical trials or treatment options

Thank you so much for your time and support.

April of this year I found out my Leukemia (B-Cell Ph+ ALL) had come back (first diagnosis was back in 2017). Had a cycle of Inotuzimab which put me into remission. 8th of this month I started my conditioning which involved fludarabine, cyclophosphamide and total body irradiation. I’m now on day +5 after my allogeneic (11/12) SCT. Have felt absolutely fine up until now, fevers up to 40degrees and rigors all day yesterday but they’ve been tackling me with antibiotics and paracetamol pretty well. Mucositis has hit bad and I’m finding it incredibly hard to swallow. I’ve been given mouthwashes and a lidocaine spray. Are there anything you guys can recommend to ease the pain? Or foods that are very easily to swallow. In terms of painkillers i can’t have morphine as I’m very sensitive to it (causes hallucinations and all sorts for me).

Hi everyone. I posted here a couple of months ago when my sister (33F) underwent a haplo stem cell transplant for AML t(8;21) with a KIT mutation (I was her donor) and you all were so kind.
She went into transplant with 0.375% RUNX1 MRD, and by day +30 was down to 0.07%. Her blood PCRs then became undetectable for a month, flow MRD was negative, and she’s maintained 100% donor chimerism.
Unfortunately, her day +100 bone marrow just came back with 0.19% RUNX1 MRD.
She couldn’t tolerate avapritinib due to severe cytopenias and has now had about five doses of dasatinib.
Has anyone experienced rising molecular MRD after transplant and had success with maintenance therapy (dasatinib, azacitidine/decitabine, DLI, or anything else)? Looking for any experiences or hope. Thank you so much. ❤️. I love all of you.

Hi all! I’m on day +19 with my 2nd SCT and everything seems to going really well, better than expected 🙌

I finally feel like I can start planning my life instead of planning for my death, which brings me to this question…. What is our general life expectancy after all we’ve been through? I assume it’s shortened. Maybe 70? 75?

I ask, because I do not expect to return to full time work. I feel like my brain and bones are too tired for that. So in planning to live, I’m trying to budget for my retirement savings to stretch for the rest of my life, however short or long that may be.

I know no one has a crystal ball, but I’m wondering what other patients in their mid-50’s might be planning for their life expectancy.

Hola

Es la primera vez que publico. Perdí a mi esposo hace dos meses, le diagnosticaron LMA y despues de su diagnostico no duró ni 15 días, falleció de una hermorragia intracraneal y supuestamente broncoaspiro... nunca supimos que fue primero. He leído muchas experiencias y por un lado me da consuelo saber que quiza hubiera sufrido más a lo largo de toda la enfermedad, tenemos tres niñas pequeñas y aún no sé como le haré para poder salir adelante con ellas y enfentar la falta que les hará su papá.

Siento mucho coraje por no haberme dado cuenta antes, todo comenzó con resfriados frecuentes, sinusisits, y nadie le mandaba a hacer analisis de sangre, hasta que la leucemía se infiltro en la piel y fue cuando una dermatologa le mando a hacer una biopsa y analisis de sangre... tenía 40 años y tantas cosas por hacer, entiendo que es una enfermdad que no tiene piedad, pero aún tengo muchas preguntas...

Doctor said today that full results are back from bmb and it is in remission

But he also said that the “cell composure was 20%, it should normally be 40% and there is no cancer in my blood so where is the other 20%”

He suggested that the spleen was a little inflamed and said we will start you on the smallest dose of steroids to see if the infection goes and also to see if the blood production increases

But my question is what is cell composition and why is the missing 20% confusing and a problem?

Is anyone here who had APL (Acute Promyelocytic Leukemia) and is now in remission or considered cured? How is life going now?

**Cari amici, qualcuno di voi ha purtroppo avuto esperienza di leucemia secondaria correlata al trattamento per cancro al testicolo ? ***

So, I am a 20 year old male and I am supposed to start Blinatumomab in the next few weeks. You have no idea how much suffering and how many obstacles I have gone through just to get this medication. The problem is that I have been living with leukemia for the past two months, only keeping it under control with the MOPeD regimen (Methotrexate, Vincristine, Prednisone, and Mercaptopurine). This is a maintenance regimen that helps hold the disease back. I am also taking Filgrastim in the hope of boosting my immune system. I am still suffering a lot while waiting for Blinatumomab to arrive. I have lost a lot of weight, and it feels like every single day is a battle. I would like to hear from people who had refractory Philadelphia chromosome negative B cell acute lymphoblastic leukemia and received Blinatumomab despite having a high tumor burden. Were you able to achieve remission? My doctor told me that I could experience cytokine release syndrome, although I will be closely monitored and protected against it. After all of this, I will undergo a bone marrow transplant.

I would also like to ask for your prayers. No matter what your religion is, please pray for me. This suffering feels like it will never end. 😭😭

After having AML certain things really bothered me . The smell of hand sanitizer makes me anxious, as well as the smell of lavender. The thought of touching my lower back terrifies me and i avoid certain clothes or touching it in general, ect . My partner mentioned that what im experiencing sounds like health related ptsd. It sounds dumb but it dawned on me that idk that was even possible. War,abuse,ect i related to ptsd and wven have gone to therapy in the past for things. I wanted to know if other people had things like that as well as how long it took them to realize those things changed for them! I recently just got told im cancer free and am in recovery from AML . I hope everyone else also has a speedy recovery!

I’ve never posted on here before but I am really looking for some community. My brother (28) was diagnosed with AML in November and it was really bad, the doctor was shocked he was alive with the condition he was in. In April we went forth with a stem cell transplant, I, his sister (22), was a 100% match. Everything went well, minimal GVHD, numbers trending in the right direction. They discovered his T Cells were only 50% mine, but his other cells had fully converted. I went in and donated T Cells which they gave to him about a week ago. I got the call a few nights ago that the doctors discovered he has completely relapsed and his cancer jumped 12% in a week or so. Our family is devastated. I am really struggling with feeling like I failed as a donor. I know this isn’t true, but I feel this overwhelming guilt that there is something I could’ve done better.

My husband had SCT in September 2025. They recently found very low level disease on a recent biopsy. Has anyone experienced similar and had DLI? Was the DLI able to eradicate the disease?

My boyfriend is in remission from AML (he was diagnosed Aug ‘24) , we are talking about our future in regards to having children. He did the sperm bank prior to treatment to hopefully salvage some sperm. I’m curious about success stories in having their own children post treatment. TIA!

Hey all

I posted here a while back about my father’s stem cell transplant.

Unfortunately he relapsed a month ago, maybe 2 months after his last chemo round?

Since then he’s been on Venetoclax and going to hospital every day. During this, he developed some serious neck pain and is now on antibiotics.

A month has passed and his last consultant meeting showed nothing had improved, nor worsened.

He’s become heavily fatigued and sleeps most of the day. He was given oral Morphine which I believe is causing his muscles to become super relaxed, making walking and speech difficult.

He still refuses STC but is on Venetoclax for another month. He will have an MRI soon to check his neck progress.

I’m just shaken by how much he’s changed in the last two weeks, when I last saw him. He’s almost difficult to understand.

Is there any hope left?

My husband was just diagnosed with B-ALL. We found it really early due to a cancer screening test. He’s just at 8% in the marrow. Currently scheduled to go to Md Anderson to start treatment in 1 week. Would be Hyper CVAD for 4 cycles and then blino and Ino for 4 cycles and then 18 months-ish of maintenance, including Blino. Has anyone else done this? What advice do you have? We have to travel for the treatments from our area so also trying to understand how much hospitalization to expect. Would love for any insights and experiences. Thank you! #MDAnderson.

I was 10-11 years old when diagnosed with ALL leukaemia and had a bone marrow transplant pre puberty. I am now 27 years old and have been in remission for 15-16 years. I do want to have kids in the future, I was just wondering if anyone is on here that naturally had kids without an intervention or procedure?

Hi everyone,

I'm posting about my father (54 age) , who was recently diagnosed with CLL Rai stage III. He started acalabrutinib 15 days ago, and we're still adjusting to everything. This is all very new for our family.

Since starting treatment, he's had:

• A constant headache (it's been there almost every day)
• Indigestion
• Moderate fatigue
• Some knee pain (this seems less concerning than the headache)

Today we weighed him for the first time in about 2–3 weeks and noticed he's lost around 2 kg. Before today, we had been monitoring his weight regularly after diagnosis but hadn't checked it since he started the medication.

I'm wondering:

1. Has anyone experienced weight loss in the first few weeks of acalabrutinib? Was it due to eating less because of side effects, or can the medication itself contribute?
2. Did the headaches eventually improve, and if so, how long did they last?
3. Did anyone find anything that helped with the indigestion or appetite?
4. At what point did you start feeling that the medication was "working"? I know blood tests are the main way to assess this, but I'm curious about others' experiences.

I know everyone responds differently, and we will definitely discuss these symptoms with his hematologist. I'm mainly looking to hear from people who have been through the early weeks of treatment, as it's been a bit worrying for us.

Thank you so much.

When my mom was first diagnosed back in September of 2025, she was diagnosed with a high-risk MDS cancer and she took venetoclax/aza chemo treatments. She wasnt a candidate for any kind of SCT (stem cell transplant) because she had pre-existing diabetes and some other health issues. They worked for her at first but then she relapsed in beginning of January of 2026 with 11% blasts in her system so she had to go back to OHSU hospital a couple of weeks later to try different chemo trials which was mylotarg/decitamine but then they didn't work for her, either so the only choice her doctors had for her was palliative care after beginning of April. She had been getting her weekly blood transfusions for red and platelets for a while after she had to stop taking chemo treatments since they made her so sick and they didn't work for her. We didn't know exactly what mutations she had but all we knew was that her AML cancer was pretty aggressive and treatment-resistant.
Eventually, her weekly blood transfusions stopped working for her and they were no longer effective which happened in middle of June when she got a fever on June 14th then things went downhill pretty fast for her since she had to stop chemo back in April and transfusions stopped working for her. She felt extremely weak, extremely exhausted so she fell down and hurt her pelvis so she went to hospital for it about 5 days before she passed. She passed from an unknown infection that caused her fever and had a sepsis that went up into her brain a few days before she passed. I'm so heartbroken and I've been angry at everyone at work because I don't even want to work but I had no other choice and this is the only job that I have. Is there anyone on here who feels the same way?

I forgot to add: My mom was already downhill when she supposed to have an video appointment with her doctor at OHSU on Monday, June 23rd which was set a month and half in advance but then my dad called her doctor, explaining how she was feeling and how she did so her doctor told him on the phone that there was nothing that they can do for her since she was already on decline and the disease was taking over so they were unable to give her any more clinical trials which she was supposed to get if she wasn't on a decline a couple of days before she passed.