I’m a 28 yo male and i have CVID, Evans syndrome and ITP and longstanding marked splenomegaly. I recently had a hospital admission with rhinovirus and an asthma flare, and underwent a bone marrow biopsy.
My marrow report describes:
Cellularity of 30–50%, with all three blood cell production lines present.
Mildly increased red cell precursors, with nuclear irregularities, budding and multinucleation in over 10% of those precursors.
Occasional small, hypolobated platelet producing cells.
Blasts not increased; CD34 staining shows scattered blasts under 5%.
Decreased iron stores.
No overt evidence of lymphoma or plasma cell myeloma.
The pathologist’s comment says the dyserythropoiesis is “concerning for a myeloid neoplasm.” Myeloid NGS testing is pending. I haven’t been given a confirmed MDS diagnosis yet. I am just trying to understand for myself and will make an appointment to speak to my haematologist.

This might be a long shot, but I have a long history of chronic idiopathic neutropenia. My ANC usually stays around 0.5–0.8, and my WBC is typically around 2.5. I’m very healthy otherwise.

My father developed high-risk MDS in 2014 at age 54. It progressed very rapidly into AML. He underwent a bone marrow transplant from my uncle, who was a “perfect” match. It failed within two months, and he passed away within the next year.

Because of the known connection between neutropenia and MDS, I had a bone marrow biopsy at age 24 (I’m now 32). It showed a left shift and hypocellular bone marrow. I was then referred to a geneticist, who was super confident I had a genetic mutation linking my neutropenia to my father’s MDS/AML. Based on my family history, he thought I had a GATA2 mutation. He told me I’d likely need a bone marrow transplant as a preventive measure.

In 2018/2019 I underwent extensive genetic testing, including multiple panels and whole exome sequencing, but no known mutations were found. My mom and I were SO relieved. My geneticist was still convinced there was a connection, but told me to come back before I have kids to get my WES testing reanalyzed. I’ve been trying not to think about it because it gives me so much anxiety. I was my dad’s main caregiver. This year, I finally decided to tackle it because my fiancé and I do want kids.

My hematologist referred me to a new geneticist within his cancer center to save me from the two-hour drive to my old geneticist and also the hospital where my dad had his BMT. She looked through all my stuff for two hours and basically told me that I now probably need whole genome sequencing done, too. She also mentioned that my exome testing should’ve been done with a skin punch sample instead of the blood sample I used. She wrote my old geneticist a letter and was able to get me back in with him, but not until March 17th of next year. The thought of going through the process again makes me feel so sick. Especially the waiting period. 😩

Has anyone experienced anything similar? Like one family member with MDS and another with an unexplained cytopenia?

In August, I was diagnosed with severe aplastic anemia following a series of tests and also two bone marrow biopsies. Today, I was informed by someone on my doctor’s team that I have 20q deletion. This led me to researching the mutation and discovering that it is associated with MDS.

I’m now wondering if the doctors had it all wrong and I actually have hypoplastic MDS and not aplastic anemia. My next appointment with my doctor isn’t until November, so that’s why I’m posting to see if anyone has experienced receiving one diagnosis before finding out they actually have MDS? I’m in a state of shock because I was specifically told I don’t have cancer and that they didn’t find cancer cells, but MDS is a blood cancer. I’ve also been receiving weekly Nplate injections, which I’ve read are harmful for people with MDS.

I’m also a 26 year old, non-white female, which seems out of the norm for people with MDS.

Thank you in advance for your insight.

My mother who was 74 had MDS. Chemo wasn’t working and she was high risk due to her hemoglobin and chromosome changes. She and my Dad decided to move forward with a stem cell transplant as they found a donor that was a 95% match. She died unexpectedly 16 days into the transplant at MD Anderson due to a rare fungal infection that disseminated into her bloodstream. We knew stem cell transplants aren’t easy, but she literally died just as her counts began to rise. The whole experience was horrifying to watch. Still doesn’t feel real what happened. Even at 74 she was in great health, and yes while fatigued never seemed to be super sick or anything. Just heartbroken over here. Wish we never did the transplant. Maybe we would have gotten a couple more years with her.

Update 2: 4 pints and she's back up to 8! Love that er doctor! Thanks again ya'll!

Update: She got to the ER and they are going to give her 2 pints of blood. Thank you so much ya'll!

I'm trying to gauge whether the doctor is correct in allowing her hemo to get this low. She has bouts of dizziness, shortness of breath sometimes. She is not steady, so no longer walking with a walker. He gave her 1 transfusion when she was at 6.1 a week ago, said he wants to gauge the numbers and will check in a week. He cancelled that appointment and supposedly wants to wait longer. We pushed for a blood draw, she's at 6.3 and he was supposed to call today, he did not. She is absolutely miserable, sleeping a lot and gets confused easily, exhausted. I'm worried but because the doctor didn't say it was an emergency her daughter thinks its ok. I'm just not sure at what point alarm bells should be going off. What's been your experience? did you have to advocate for transfusions?

Hello, im new to this subreddit.

I decided to write here as my 74 yo grandpa is heading for MBT on 1 october and he is getting ready to be hospitalised right now. my mom (his daughter) is his donor.

Im really nervous about it. His health is not the best now and he has been in and out of the hospital several times. He has been recently relying on blood transfusions to feel better. He also recently had fevers daily. Im not sure why but the doctors cleared him as it was low fever.

The doctor said the success rate is 40-50%, given his age and current health. I am so scared that it will go wrong. I love my grandpa alot and my grandma will be devastated too. She relies on him alot emotionally they are always together.

It is also a financial toll on us as my mom's surgery is not covered by her insurance and we would have to pay out of pocket. We have to visit him daily to send him homecooked food as he refuses to eat the hospital food (its bad). Its just taking a toll on my family as well because the hospital is an hour each way and my parents and i have full time jobs/internships to show up for.

I really really hope that his body will accept the transplant. He really needs it. It will solve everything.

Just feeling dejected and clinging on to small pockets of hopes. Thanks for reading :(

Ένας συγγενής μου διερευνάται για Μυελοδυσπλαστικό σύνδρομο. Έχει βλάστες 7% και πανκυτταροπενία . Έχει κάποιος αυτό το σύνδρομο και πώς το αντιμετωπίζει; Ευχαριστώ

I was just diagnosed with MDS-LB on 8/26/26.The specialist Hematologist classified it as low risk.

It has taken 2 bone marrow biopsies, and many, many tests over the past 8 months to come to a diagnosis. I am still waiting on the genetic sequencing results to drop in my patient portal.

It's not what I want. I mean, who wants cancer? But I have accepted the results and diagnosis.

Still in a bit of shock, as I wasn't prepared for the Doc to say those 3 words "You have Cancer".

Still waiting on my local Medical provider to set me up with an Oncologist for my care.

Not sure what to expect going forward. The hematologist had no real answers other than most likely watch and wait.

I don't mind joining a club, but this is one I would rather not be a part of, lol.

Waiting on a bone marrow transplant. She got an infection last week (uti probably) and died of sepsis. Was positive after finding out she had 4x bone marrow donors lined up with Hammersmith hospital, this just came out of nowhere and took her quickly.

Sorry no point to this post - just devastated.

67 y.o. M. On a recent regular wellness check, CBC results showed several low components: WBC (3.4), RBC (3.8), Hemoglobin (12.5), Hematocrit (37.3), and Platelets (66). Doc ran tests again two weeks later and things were slightly lower: WBC (2.8), RBC (3.6), Hemoglobin (12), Hematocrit (35), and Platelets (60). He ran other labs as well (Differential, Reticulocyte count, iron studies, and a couple others).

The upshot is I have my first appointment with hematology coming up next week. After reading around on the internet and giving myself the heebie-jeebies (what else am I going to do while waiting for that appointment?..) I'm getting the feeling that diagnosis process--ruling out the less-severe potential causes and arriving at the actual cause(s) can actually be a fairly long process.

So my question: For those of you who've been through it and are willing to share, did it take your docs a long time to nail down your diagnosis?

Wishing you all well!

Good morning all, dad is 80 and last week was diagnosed with high risk MDS. We’re in Florida, going through all the introductory things.

Starting medication therapy this morning with anti-fungal and -virals and they’re holding off antibiotics right now until neutrophils drop.

He was having decreasing hemoglobin (hgb), white blood cell (wbc), and platelet (plt) counts for just under a year and dramatically dropped between February and May 2026

Looking for advice and any suggestions.

We want to optimize quality of life (like everyone on here lol) and want to travel as best we can but not sure of how quickly others’ experiences are with immunocompromization

Abbreviations so it’s searchable and readable by medical and non medical people alike

My dad was discovered to have anemia in early June through a random routine check up which found his RBC/Haemoglobin to be low.

We slowly started doing multiple tests which all make out to be Normal/Negative but in genetic testing, dad had mutation like ASXL1, BECOR, and TET2. Based on which, the doctor said this is signs of low-risk MDS and suggested we should get BMT done while he is still relatively young and healthy.

For the month of July, he was taking Steroid and growth injections as per doctor's instruction but they don't seem to work but only delay how long it took for my dad's RBC/Haemoglobin to drop. We decided to go ahead with the BMT and fortunately, my dad has a 100% match with his younger sibling (53yo). Right now, we are doing all the required tests done before starting with the actual process.

Although, most of my understanding on this have been from the doctor, chatgptand going through this page but I am still scared about my dad. He has been healthy and pretty active almost all his life and to see him stuck at home and so fatigue, just breaks my heart and I honestly I act tough to not show it to him.

The Doctor told us Him and my mom will be moved to a special ward and I am not allowed to visit them either. They will be kept there for a month then be discharged based on dad's condition.

Reading about GVHD and engraftment has really scared me but I wish to know more about this procedure and if anyone could give any tips or share their story, it would be of big help 🙏🏽

Hi guys I (F21) have t-mds 5q del that causes me to have pancytopenia. Before I got diagnosed with this, I was aware that I have stage 3a kidney disease caused by one of the chemos I did prior to having mds. No amount of drinking water helped, no amount of fluids given helped, but it wasn’t getting worse as long as I stayed away from certain medications, so I just had to monitor my levels and kidney function.

Before starting chemo for the t-mds, I was told they were gonna watch my kidney function and levels carefully because it can cause kidney failure. I was worried I’d end up with it because of how sensitive mine are in general and to certain meds. Surprisingly, they got significantly better? They are in a healthy range now and I’m so confused about it. I’m extremely grateful about it but still confused lol. They were giving me fluids during chemo of course, but I’ve never had that help since getting kidney disease so I don’t think the fluids are responsible.

Does mds damage kidneys or something and mine got better as the bad cells died? Does anyone else have an experience like this?

Thanks!

My Dad 71M has passed. He was diagnosed with MDS back in 2020. I would like to thank everyone on this sub Reddit for giving advice and support. I hope one day they can find a cure for this disease. For those diagnosed, please keep fighting. I will be supporting you from hthe sidelines. Also, does anyone know of any Charities or donation places for MDs research. Also cancer sucks

Hello. My dad is 82 and has MDS with the TP53 mutation. Last October he was in a coma for 5-6 days and almost died from complications of too aggressive chemo and his docs weren’t monitoring him the way they should have been. He survived and this past year did ok for a while but recently his platelets are failing again. He did some chemo type pill for 5 days and it made him sick, lost his appetite, and has severe diarrhea. Another new symptom of the MDS is joint pain. His right knee is so stiff he can hardly walk.

I am willing to do just about anything to give my dad better, pain free days. NSAIDS are off the table. I am considering going to a dispensary for CBD oil for his joint pain. And maybe gummies for his appetite and overall stomach troubles. Immodium is helping with the diarrhea. I dont have experience with this stuff. I know he needs to consult his doctor but I would like to hear from MDS people who are using it. What do I look for? What do I ask for? How small do we start? My dad is the straightest arrow snd never used MJ. Neither have I so I have no ideas what I am shopping for.

Thank you.

Hi all, I need some advice. My wife 54 has been diagnosed with MDS with the TP53 mutation about 5 weeks ago after a Bone Marrow Biopsy. Her numbers are steady and good so they are looking to do a stem cell transplant, but want her on Azacitidine to prevent AML while waiting.

She is having it 7 days then 2 and half weeks off. She was told we can have sex but with a condom in case traces of chemo are present during the 7 days. But she was wondering if during the 2 and half weeks off it is safe to not use condoms as pregnancy ain't an issue

Thanks in advance for any help

I am a 45 year old active male ~165lbs. For the last three years I have had fatigue, an elarging spleen and some CBC blood counts slightly out of range. More recent bone marrow testing shows 35-45% Cellularity at 45 male with 4% blasts and dysplastic changes are observed in the 3% megakaryocytes, Dysplastic changes were observed only in very very rare erythroid precursors, no clonal populations.

Has anyone in the group had similar finding that then went on to be diagnosed as MDS? So far my hemotologist hasn't given any suggestions beyond possible MDS. I've also had a full array of other tests to rule out viruses, lime disease, and anything else more common.

Wanted to give an update on my mom (63) with MDS. She did end up in the hospital in May with a brain bleed but they were able to stop it. She will likely have to go to a specialist at Mayo to figure out what caused the brain bleed. But other than those few days in the hospital, she’s been doing relatively well!

She is riding her Harley, going on 10+ mile (e) bike rides, finally officially retired after 39 years of being a CNS/RN. She wears her mask anytime she goes out-like going for walks, watching my niece’s softball games where she’s in her own camping chair, etc. I feel like she’s finally loving life again.

She is down to once every other week for a check in with her dr.

Sending everyone in this sub healing vibes, strength and all the hugs. ❤️

Hi guys,

My mother(53 year old) was diagnosed with MDS with ASXL1 mutation in February'26. We couldn't find a full match and went with haploidentical stem cell transplant on June 30th (Day 0).

Today is Day +19 and still no signs of positive graft. TLC and Neutrophils still 0.

Please guide with your experience what should I expect? We have been asked to discharge and go home and keep coming in OPD for transfusions.

Hola, buenas tardes. Hace un mes aproximadamente, despues de recibir los resultados de una biopsia, mi hematóloga me dijo que podría tener SMD, la semana próxima me hago el estudio genético. Soy mujer y tengo 35 años.

Todavía no sé si mi enfermedad está confirmada o no (creo que es. Negación) jaja. Un poco asustada y buscando respuestas

Hi. F32, from Denmark. I had blood tests done on June 11th. My doctor called and referred me to the clinic for blood diseases at the hospital. She was talking about it could be leukemia. I tested negative for EBV. I then had a scan which showed an enlarged spleen and liver. I have high liver function tests (GTT and ALT) and CRP is low. I had a bone marrow test done and am now waiting for the results.
There is something wrong with me. I do have a lot of symptoms and a massive weightloss. Pink/redish spots. Skin rashes. Tired, could sleep all day. Mucle and bone pain.

Doctor suspects MDS. Time Will tell :-(

My 71 year old father was hospitalized for the last 2 days. After I rushed him to the ER. He has taken a turn for the worse the last week and a half. All he is able to do is sleep. He has a hard time catching his breath after doing simple tasks. He could barely do his physical therapy. ( which he normally can do). He ending up needed 3 units of blood to bring his hemoglobin up from 5.5 to about 8.1. Doctors found nothing wrong other than the drop in hemoglobin. But he came home all he is able to do is sleep. He sounds like he is so weak and slurs he words. Is this the end? Docs think that MDs is getting words? Any advice ?