r/Hematology Nov 30 '25

Looking for survivors with MECOM-rearranged / complex karyotype AML (monosomy 5 & 7, persistent disease after 2 stem cell transplants). Please help me find them.

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25 Upvotes

Hi everyone,

I’m reaching out because my sister is fighting for her life, and we’ve reached the point where every piece of information, every connection, and every survivor story might make a real difference.

My sister is 22 and has a very rare, extremely high-risk form of acute myeloid leukemia. Her cytogenetics include:

  • MECOM (3q26/21) involvement
  • Monosomy 5 and 7 (and also monosomy 1)
  • Complex karyotype
  • NPM1-, FLT3-

She relapsed early after her first allogeneic stem cell transplant (unrelated donor, Jan 2025). She then underwent a second allo transplant using my stem cells.
Despite everything, she still has 12–14% blasts, and she’s also fighting a disseminated fungal infection (Mucor + Aspergillus). Immunosuppression is being tapered to try to induce graft-versus-leukemia. She’s in a very fragile and dangerous situation.

I know that her subtype is one of the toughest in AML. But I also know there are rare survivors out there — people with MECOM-rearranged AML, inv(3)/t(3;3) AML, and those with monosomy 5/7 + complex karyotype who managed to beat the odds. Even a handful of these cases exist, and I’m trying to find them.

I’m asking for help with two things:

  1. If you or someone in your family survived AML with similar genetics (MECOM-rearranged, inv(3)/t(3;3), monosomy 7/5, complex karyotype), I would be incredibly grateful to speak to you. I want to understand what treatments worked, which centers helped, and what gave you a fighting chance.
  2. Please help share this post — in leukemia groups, Facebook communities, Discord servers, anywhere. This cancer subtype is so rare that the only way to find survivors is through human networks.

I’m not looking for miracle cures. I just want to learn from people who succeeded against similar odds. Even one message from someone who has been through this could help me point her doctors toward something they haven’t tried yet.

If you know anyone who might be connected to cases like this, please forward this post to them.
If you’re comfortable reaching out privately, please message me directly.

Thank you to everyone reading this — even if you can’t help directly, sharing this could genuinely save her life.


r/Hematology Apr 26 '25

Which Hematology Books Would You Recommend?

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17 Upvotes

Hello everybody I am currently a resident in medical biology, working in the hematology department. I would like to have your opinion on which books to study. Given the large number of available books, which one would you recommend? Thank you!


r/Hematology 23h ago

Abnormal RBC

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8 Upvotes

Patient came on this morning with pretty bad labs. Sysmex threw up flags along side 6% IG so I did a smear review. What are these RBCs? I’ve asked a couple techs they told me could be my technique but I’ve never ran into this and couldn’t find any reference pics. Gonna send out to path but anyone have any idea?


r/Hematology 2d ago

Question NRBCs or Lymphs

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18 Upvotes

Hey fam! I feel absolutely gaslit hahaha. I have been told that these are NRBCs, but I genuinely believe all 4 are lymphocytes?!


r/Hematology 5d ago

Question Very random phone call from Life Share…Please read…

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14 Upvotes

So I just had a phone call from a Life Share scientist from a local number. He proceeded to tell me there is a case study happening with experimental equipment. Apparently I have the blood type (A+) with an extremely rare mutagen. The mutagen is the (RH D WEAK D 85?). It’s so rare that over the past 80 years in America I’m the only person alive in the southern United States with it. Of course I’m in shock, I have no idea what any of this means. He said if I agree to the trial which would be don’t at the local life share he would give me $100. If I say no the guys that built these machines that study this mutagen will be screwed. Does this make any sense to anyone? My wife says I’m being scammed but the number he called from checks out. He said to meet at Life Share so he can fly the scientists in to get the blood. I just don’t see why this would be a scam?


r/Hematology 6d ago

QUESTION

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0 Upvotes

r/Hematology 12d ago

What is this thing floating in the serum?

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21 Upvotes

I was collecting serum from some patient samples.

I found this weird looking thing floating after I spun a red top tube at 1500g, 10 minutes at 4°C. I collected the serum anyways but I am just curious as to what it could be? Some clotting thingy?

Thank you in advance!


r/Hematology 12d ago

spherocytes?

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7 Upvotes

r/Hematology 15d ago

Hemophagocytic cell in bone marrow

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25 Upvotes

r/Hematology 16d ago

Hematopoiesis Explained | Immunology | Hematopoietic Stem Cells, Progeni...

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1 Upvotes

r/Hematology 19d ago

CME HemeHub Hematology Summit

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2 Upvotes

The HemeHub Hematology Summit is a one-day, live educational program taking place on October 3, 2026, at the Gaylord Texan Resort in Grapevine, Texas. This activity will feature expert-led presentations and focused discussions addressing the latest advances in hematologic malignancies and complex benign hematologic conditions.

This program is designed for hematologists, oncologists, internists, trainees, healthcare professionals, industry professionals, and patient advocacy stakeholders involved in hematology care.

Key educational areas include: Lymphoid and myeloid malignancies, Plasma cell disorders, Myeloproliferative neoplasms, Bone marrow failure and rare hematologic diseases, Cellular therapies including CAR T, and Evidence-based updates in diagnosis and management.

The goal of this summit is to enhance clinical knowledge, improve patient care, and promote collaboration across hematology specialties.

Event Details:

  • Gaylord Convention Center, Grapevine, TX
  • Saturday, October 3, 2026, 7:30 am to 4:30 pm
  • CME-accredited Hematology educational summit complimentary to healthcare workers
  • Networking lunch with live music

r/Hematology 23d ago

so i noticed uow big the platelets were on this slide. and nearly every neutraphil looked segmented. also nee to this so let me know if im missing anything

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6 Upvotes

r/Hematology 26d ago

Question Any thoughts about this?

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5 Upvotes

Help a student out! This is an unknown slide and we need to know the diagnosis of the patient. Do you have any ideas about this?


r/Hematology 28d ago

Question Any thoughts on this?

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10 Upvotes

WBC: ~14k/µL
Absolute lymphocytes: ~7k/µL
Hemoglobin: ~11 g/dL
Hematocrit: ~35%
MCV: ~94fL
Platelets: ~150k/µL

Female, 87yo


r/Hematology Jul 30 '26

Question Could someone please explain the P1PK blood group to me?

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25 Upvotes

I looked it up online, but it’s way too technical for me to understand. Couldn’t find helpful YouTube videos to dumb it down for me.


r/Hematology Jul 30 '26

Study HCPs: Use plasma? Take this survey

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3 Upvotes

POSTED WITH MOD PERMISSION

This survey asks medical providers as well as patients and caregivers their experience with plasma-derived medicines. It takes just a few minutes to fill out, please take and share widely!

Plasma Survey: https://www.surveymonkey.com/r/IPAWpatientsurvey


r/Hematology Jul 26 '26

Question Blood Reference app

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0 Upvotes

Honest post: I’ve shipped several apps and never quite gotten the response I hoped for. My latest is Blood Reference — a free app to help people make sense of their blood work. I’m not here to sell anything (it’s free), I just want to know if it’s genuinely useful or if I keep missing something as a solo dev. Brutally honest feedback welcome — that’s more valuable to me than downloads right now.


r/Hematology Jul 21 '26

Question A BM aspirate slide

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23 Upvotes

It looks beautiful. My supervisor reported it as normal.


r/Hematology Jul 15 '26

Question The role of ferritin in IDA

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25 Upvotes

I have no formal medical education but I’m hoping to get a better understanding of iron deficiency anemia. If iron saturation and hemoglobin are responsive to oral iron supplements, what would cause a decrease in ferritin and an increase in TIBC?

If ferritin decreases while iron increases, could it be indicative of bone marrow dysfunction or more likely gastrointestinal blood loss?

I’m sure this topic is very complex but I’d appreciate any insight or literature recommendations so I can gain a better understanding. Thanks!


r/Hematology Jul 13 '26

Question What type of cell is circled in this blood film?

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15 Upvotes

Is it a blast cell?


r/Hematology Jul 12 '26

Blood Report Tracking - For whole Family

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0 Upvotes

How do you track yours and your whole family members blood reports?

Do you usually have report papers stored in one place or use a platform to store it all in one place?


r/Hematology Jul 10 '26

Interesting Find Name that cell

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21 Upvotes

Although I would love to call this a skipocyte, I'm thinking giant thrombocyte? Cool cell though. 😎


r/Hematology Jul 09 '26

Que celula é essa?

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11 Upvotes

Me parece que cromatina está mais frouxa, mas não me parece um monócito, talvez linfócito reativo mas essas lobulações...


r/Hematology Jul 09 '26

Saw an angry cell at work today 😡

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30 Upvotes

r/Hematology Jul 08 '26

Question Are these lymphocytes or something else?

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15 Upvotes

I'm having a hard time telling lymphocytes from monocytes here... Any help is appreciated!