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.

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

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?

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,

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.

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!

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.

Any one have any experiences with CMML? My father was just diagnosed and I am processing it all. Absolutely terrified and trying to get research.

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?

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!

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

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 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!

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?