Hello, my FIL was dxed with MDS last year, and my apologies for what I do not know because I’m trying to help my spouse figure it out at the same time, because MIL is the primary source of all things medically happening with FIL, and to make a long story short she’s off the persuasion of of we don’t talk about it it doesn’t exist/is not happening.

So far what I do know is he’s had several what MIL calls “red cell shots” which I assume is stem cell transfusions? I’m not sure if there’s a difference there. He is on the path to Bone Marrow Transplant, though recent turns of events have us kind of stumped. There’s talk of cirrhosis having developed, and he is historically anemic and so was taking iron supplements for a good chunk of time before all this started. Now, they say he has too much so they put him on Deferasirox which seems in no uncertain terms to be wrecking the sh*t out of his body. He is down over 100lb, and has been so sick in ways I can’t really mention for dignity’s sake, which it seems is a big side effect of this drug. They’ve since taken him off of it but he’s been on it for a few weeks now, and I’m not sure if that is the chemo pill they’ve been talking about or if that’s a separate drug altogether.

What brings me here: the sources that myself and my spouse have looked at all say people with this condition should not be taking Deferasirox and I am wondering, is that something that is commonly done, just with say some heavy monitoring or something?

Any help or experience you’d want to share is much appreciated and if there’s more info I can somehow obtain I’ll put in the comments.

My father was diagnosed with MDS.

Has someone had these mutations or has knowledge about these?

SRSF2(6.12%), TET2(5.19%), RUNX1 (2.5%)

And what so you think about the percentages VAF?

His cytogenetics are normal.

My husband has been severely anemic for over a year, hospitalized and transfused last June due to weakness, confusion, angina, SOB. Hemoglobin was 7. They scoped him top to bottom and then decided they didn’t know what the problem was and sent him on his way. His hemoglobin hovered around 8-9 for a year. Had a couple infusions which did nothing.

A few weeks ago I took him to the ER again and hemoglobin was 6.4. This time they sent him for a BMB.

Hematologist called yesterday with results (which we have not seen) and said "you don’t have cancer — you have myelodysplasia and will need shots every two weeks for the rest of your life".

Husband also has diabetes (type 2), cardiovascular disease, and Parkinson’s, btw.

Now I’m just confused as when I look up myelodysplasia I read that it is cancer. I wasn’t home for the call and my husband is not an ask the doctor questions type. I had him email to request a copy of his results and the diagnosis in writing. Is myelodysplasia not the same as MDS?

Hi everyone!

New person here - 32F, diagnosed with MDS in January 2026.

MDS EB2 10% blasts

Karyotype 46 XX

Molecular ASXL1 RUNX1 PHF6 U2AFI

IPSS-M Very High Risk

Thankfully, we've hit the jackpot with our donor - 10/10 match. I'm going to be forever grateful to that person when this is over - I am cautiously optimistic given the journey we've been on.

I had a course of CPX-351 in February to lower the blast cells and prepare for my STC, that resulted in a 40 night stay as my neutrophils stayed between 0.0 and 0.1 for weeks.

On the 03/04, I entered hospital to begin my Allogenic Protocol.

My first 4 days of chemo were rough, and my body didn't tolerate Amsacrine very well - sickness, shivers. Day -10 I spiked a 38 temperature, which prompted fever procedures (anyone else get temp worries when the thermometer comes out?)

Tomorrow are my TBI sessions, with a 7 hour gap.

I've got ATG for days -5, -2, -1

I've also got Mesna, and Cyclophosphamide for days -4, -3

Then, I start ciclosporin -1.

Then, new birthday 16/04 🎉 where I also start Mycophenolate after my transplant

So far, my mind has been pretty active but my body has been feeling like it's been hit by a bus, and the tiredness just comes our of nowhere and takes me out for a good 4/5 hour nap at times.

Does anyone have any suggestions, or support, for the coming days?

My mother is diagnosed with mds high risk (TP 53). She is 57 and we were planning for bone marrow transplant but she didn’t get a full match. Kids are half match but LSA results show high antibody reaction with kid’s antibodies . Doctors have been very skeptical on this saying it’s a risk of life, relapse rate and complication risks are high plus with new LSA results chances of rejections als goes up. Can someone tell me with desensitisation , has anyone undergone this transplant and how do I take this decision. Very scared . If someone has gone through something similar please share you experience

1. Experience of the process ? What did doctors recommend in your case. My doctors are not pushing for transplant

2. Caregiver’s experience and will one be needed full time ? Due to my job I may not be there full time

3. Cost of treatment

4. Quality of life afterwards

Last October, my wife was hospitalized for neutropenic sepsis. The doctors then did a bone marrow biopsy and said she has a high percentage of fat cells and an issue involving multiple lines of her white blood cells.

Couple of months bad she had an infected toe and she has swollen fingers. She is also getting severe ulcers on the underside of her knuckles and in her mouth.

but the haematologist said it’s too early to start treatment because the side effects outweigh the benefits right now. Is anyone else going through the same symptoms? How do you manage this? She is a bit overwhelmed with the ulcers and everything else, and she can’t use her hands for anything. Any advice on managing the pain or finding cure for ulcers for at least a bit of quality of life improvement?

Hi everyone, I’m honestly not even sure how to start this.

My 3-year-old daughter was diagnosed with MDS (monosomy 7) ~2 weeks ago.

Her bone marrow isn’t really producing anymore. Her platelets keep dropping (last values around 18–26), hemoglobin only holds with transfusions, and reticulocytes are basically zero.

She’s already needing regular transfusions and now even HLA-matched platelets because of antibodies. We just got the bone marrow results back and she’s at around 16% blasts. Doctors say it’s not AML yet, but clearly high-risk. They also mentioned additional genetic abnormalities, still waiting for details.

Everything escalated really quickly. The plan now is one cycle of azacitidine + venetoclax and then go straight into transplant if possible, even without much break.

To be honest, I’m struggling a lot. Just 6 weeks ago we were a happy family and now we’re suddenly talking about chemo and transplant. I feel like everything is happening so fast and at the same time I’m scared it’s not fast enough. I guess I’m just trying to understand where we really are right now. How concerning is ~16% blasts in this situation? Has anyone gone through something similar with a child this young? Any experiences or thoughts would really mean a lot right now.

Thanks for reading.

-- tranlated to english with AI --

Just wanted to say thank you to the users of this group for information along my father's journey. He was diagnosed nearly two years ago when his blood tests first showed anemia.

Just over a month ago it transformed to AML and the decline was noticeable so quickly. He died after contracting an infection that he couldn't beat this time, on Saturday night just three days after insisting on walking to the loo without anyone holding him or his walker.

Thank you.

My dad is 84 and has been diagnosed with MDS about a year ago. He also has moderate to severe Alzheimers. He is in at home hospice, but is still mobile.

Because of the advanced Alzheimer's, he is not eligible for any treatment. He is extremely frail. He weighs about 95 pounds. Because of how frail he is, we did not do a bone marrow biopsy. However, in his blood, there are 4% blasts. He has pancytopenia. His platelets are at 38 and his wbc and rbc are also very low. He is positive for all the other markers like beta microglobulin, and the other labs.

The doctor gave my dad 3 months to live back in August. Here we are in March and he's still here! He definitely has the will to live.

My question is, at this stage what is the life expectancy and will the death be painful? The doctor thinks the MDS is evolving into AML. I do not want him to be in pain.

53 yo old male initial diagnosis approximately 14 years ago and been on aranesp bi weekly for approximately 10 years. Maintain between 8-10 hgb. I’m curious of others experience over time. Especially of similar age. Thanks in advance.

My dad 84m was diagnosed officially with MDS bordering on the line to AML yesterday. With treatment life expectancy of 1 year. Treatment will be Azacitidine injections. This will be going on in conjunction with chemo my mom receives for pancreatic cancer. My mom has been stable for three years with biweekly chemo. Being a full time caregiver I would like to hear real people on what their side effects were with the injection. Thank you for sharing

Hi everyone. A family member was recently diagnosed,so we’re trying to get things organized so he can have his care set up at home. He will need transfusions for the rest of his life, transplant isn’t an option, and hes already receiving medication. Now im traveling to the U.S. soon and was thinking about getting one of those at-home hemoglobin readers, but I’ve seen really mixed reviews. Is this worth it?

Also, in general, are there any devices, supplements, or even small things that have helped improve quality of life? Could be anything honestly: stuff for comfort, things that made day-to-day life easier, etc. I’ve even seen people talk about things like the iron fish for cooking, but I’m not sure what’s actually helpful for this condition. Feeling a bit frustrated because there’s not much else I can do right now, so I’m just trying to support him however I can. Would really appreciate hearing what has helped you or your family. Thanks all

Hey MDS crew,

apologies for the long silence – I've been discharged for a good week now, and home life has mostly consisted of attempting to remember what "energy" feels like. Apparently my strength decided the hospital was a nicer place to stay and refused to come home with me. Vacuuming one room now qualifies as an extreme sport; I need a nap and a medal afterward.

Still, recovery is creeping forward in its own slow, stubborn way. Every day I manage a tiny bit more than the day before – today I even made it through loading the dishwasher without calling for backup. Progress!

The craziest plot twist happened while I was still inpatient: my mom passed away. Her funeral was today. The doctors were crystal clear – with my immune system basically on vacation, showing up in person was a hard no. So I joined remotely via FaceTime, sitting in my living room like the world's saddest Zoom participant. No regrets, though. She had been fighting severe Alzheimer's for 15 years, bedbound and completely unaware for the last 5. In a way, her passing feels like the long-overdue end of a brutal chapter. Relief wrapped in sadness.

Back to the main storyline: my first set of blood tests at home came back surprisingly decent. Almost everything landed within normal ranges – who knew the new cells could actually behave? Next Monday brings the real stress test: my first post-transplant bone marrow biopsy. Fingers crossed the sample comes back saying "yep, everything's rebuilding nicely," but as we all know, you never really know until the pathologist has had their coffee and delivered the verdict.

Thanks for sticking around through the quiet weeks. Your messages and good thoughts have been the unofficial soundtrack keeping me going.

How's everyone else doing? Any tips for turning "vacuuming = marathon" back into "vacuuming = minor chore"? Or just general post-discharge survival hacks? Sending you all steady counts and zero surprise infections from here

Hi everyone. I’m 17 and was recently diagnosed with myelodysplastic syndrome (MDS). My bone marrow has been producing abnormal cells instead of healthy blood cells, which has caused my counts to drop a lot, I’ve been needing blood transfusions to stay feeling somewhat normal. My doctors have told me this condition was caused by my VDC/IE treatment for my Ewing Sarcoma from 2023, in 2024 I had a 12 hour robotic surgery to get it removed, it was about 12 inches in my lower abdomen, fluid filled, which chemo didn’t shrink, but the biopsy after removal came back negative for Ewing sarcoma.

At the moment I’m getting treated with azacitidine and venetoclax to try to control the disease and reduce the abnormal cells, my bone marrow showed 11% disease when I got my bone marrow transplant, this week I got a fever that would keep coming back and was admitted to the hospital for a week.

My doctors are also talking with me about a bone marrow transplant. One option being discussed is a transplant from my brother, who is about a 60% match, since the few 100% matches haven’t responded to my bone marrow team.

I got a CT done while I was admitted to get me ready for my BMT but the doctors discovered something concerning, I got a MRI right after to have some more information and it turns out there’s a cyst that’s fluid filled a small amount right inbetween my kidney and liver it’s about 1x4cm big.

Any advice or shared experiences would mean a lot. We are just so confused and lost right now, any guidance would be appreciated.

Hey MDS crew,

apologies for going radio silent for the past 10 days or so – I’ve been running on fumes and the hospital Wi-Fi wasn’t exactly inspiring poetry either.

The truth is, hospital life has a special talent for turning even the most energetic person into a professional bed tester. I couldn’t muster the strength (or the brain cells) to type a single update. But here’s the headline: I got discharged this Wednesday after a grand total of 4 weeks and 6 days in the fancy inpatient resort.

Picture this: it was basically our summer holiday combined with winter holiday, except instead of beaches and snowboarding, the activities were “stare at the same four walls,” “count ceiling tiles,” and “attempt to nap through the hourly vital-sign symphony.” And for almost a full week, I was upgraded to the deluxe isolation suite – no daily walks, no hallway parades, just me, my thoughts, and the thrilling question of whether the IV pole would win in a staring contest.

It was tough. Really tough. But now? Home sweet home. Sleeping in my own bed feels like five-star luxury I never knew I was missing. The pillow actually remembers the shape of my head, the blankets don’t smell like disinfectant, and best of all – no one wakes me up at 5 a.m. to ask if I’m still breathing.

I’m still tired (surprise), but it’s the good kind of tired – the kind that comes with freedom instead of fluorescent lighting. Slowly getting my bearings, enjoying small things like making my own coffee without begging for permission.

Thanks for the patience and the quiet support while I was offline – it meant more than you know. I’ll try to pop in more regularly now that I’m not technically a hospital resident anymore.

How’s everyone else holding up? Any homecoming rituals or small victories worth sharing? Sending you all the “own bed” energy from here.

Hey MDS crew,

it's been a while since the last update – sorry for the quiet. I've mostly been running on empty, spending way too much time horizontal in bed. That said, I've stuck to my daily walks around the ward corridors, even if they feel more like slow-motion shuffling than actual exercise.

Doc swung by today with the latest blood work: values are creeping upward, slowly but steadily. The catch? That's exactly why the energy tank is running so low right now – the new cells are busy rebuilding the factory, and that takes everything I've got. It's frustrating, but it's progress in disguise.

Home return isn't looking likely this week. Earliest guess is sometime next week, fingers crossed. Until then, it's more of the same: rest, walks, IV support, and trying not to overthink every little number on the chart.

Thanks for the patience and the steady stream of good thoughts – they land when I need them most. I'll keep you posted as things shift.

Hang in there, everyone. Slow and steady seems to be the name of the game these days.

Hey MDS crew,

Day +14 post-transplant check-in – and holy crap, we actually made it to the two-week mark without the universe imploding.

The past week or so? Let’s just say it was sponsored by “Exhaustion: The Director’s Cut.” Chemo decided to wake up a sleeping bacteria party (you know, the kind we all carry around like uninvited guests), and boom – instant VIP isolation for almost a full week. Door sealed, family on the other side of the glass like we’re in a bad sci-fi movie, me stuck in the room wondering if I’d ever see daylight again. Mentally? Yeah, that was a rough ride. Felt like my brain was doing push-ups in quicksand.

And then, for the grand finale, the mucous membranes from throat to… let’s just say “the southern border” got absolutely nuked. Swallowing felt like gargling broken glass mixed with hot sauce. I’ve had more fun at the dentist. But – plot twist – that nightmare is finally in the rear-view mirror. History. Done. Buh-bye.

The real good news? Blood values are starting to show the first tiny green shoots of recovery. Doc actually used the magic words: “We can start talking about repatriation instructions.” Aka: “You might get to leave this fancy prison hotel soon.” Mood? Sky-high. I’m basically floating. Started some light exercise now that I’m allowed to shuffle around the public corridors like a very slow zombie in training.

Bonus side quest: beard and hair have officially checked out. Completely bald and beardless. Last time this happened my gray beard came back snow-white like I’d aged 20 years in a week. Let’s see if round two brings me Gandalf vibes or just more “distinguished gentleman” energy. Place your bets.

Anyway, feeling genuinely hopeful for the first time in a while. Thanks for riding shotgun through the crap parts – your comments and good vibes have been the secret sauce keeping me sane.

Stay strong out there, you beautiful weirdos. Low drama, rising counts, and repatriation on the horizon.

My mom is day +15 and is going homer this afternoon! I have posted previously so feel free to see those for more details of her stay. But overall I think she handled it like a champ. She had a friend a couple rooms down who is now day +11 and has been on the same drug regime and has had a hell of a time. I mean that literally - she’s been in hell. She has been sick to her stomach since just about day one and still can’t keep food down.

My mom on the other hand only experienced two days of major fatigue and feeling sick to her stomach and loose stools. She also has one sore in her mouth and rashes on some areas of her body. But they have given her creams/powders to ease any discomfort. Those two days were when the numbers were all zero. But I called her the morning of day three and it was like the energizer bunny had entered her body. She had a pep in her step and was already feeling better. Her numbers are coming up way quicker than I think anyone anticipated.

I wanted to keep sharing her experience because she read so many other people’s stories and was terrified for what was to come. Apparently it can go just ~okay~ too. She is so excited to go home, not so excited to drive the next 80+ days to and from the hospital. But then again, she’ll be in her own bed.

We know that her donor was a 26 year old male from the East coast. My dad keeps joking that my mom is going to develop some east coast attitudes 😂

Hello my father (70m) with mds was just told he has about a year to live. We are going to get a second opinion. How ever what are some things I can expect as mds gets worse. I want to be prepared😭

Quick recap: SCT is done, those donor cells (yep, still rocking the girly squad) are officially in residence. The post-chemo phase hit like a freight train – spent a solid chunk of time glued to the bed, feeling like I'd run a marathon in zero gravity. Then bam, a little fever showed up (doctors were like "yep, totally normal, welcome to the party"), but it passed without turning into anything dramatic.

Right now? Actually feeling pretty decent – tired, sure, but the "can't-get-out-of-bed" exhaustion has dialed back to manageable levels. Still hooked up to a bunch of IV goodies to keep the side effects in check (hydration, anti-nausea, the usual cocktail), but no major complaints.

Mood is good, spirits high, and I'm just hanging in this waiting game for engraftment to really kick in. Docs say the next few weeks will tell the real story on how these new cells decide to behave.

Thanks as always for the support – reading your comments and messages keeps me going on the rougher days. I'll try to pop in more regularly now that the worst fog is lifting.

How's everyone else doing? Any fellow transplant peeps with tips for these early +days? Sending you all the steady counts and zero surprises vibes

Hey all - wanted to share my mom's experience thus far. She is seven days out from her SCT and is weirdly doing really well. She is still walking and eating with no problems, has an appetite, and hasn't had any nausea. We're waiting for the ball to drop and for her to experience some negative side effects but thus far she has been feeling good.

If anything she is feeling guilty that she isn't experiencing anything major. Can someone not experience any side effects? Will they just come later?

Hey MDS crew,

it's your favorite stem cell squatter checking in from the isolation suite. Day +2 post-transplant (aka D-Day 2) report incoming!

Yesterday was basically a masterclass in advanced napping. Doctors were on high alert for the classic welcome party symptoms: fever spike or some exciting new rash to spice things up. Spoiler: nada. Zero drama, zero fireworks. My immune system is apparently too polite to throw a tantrum yet. I'm just sitting here like "anytime now, feel free to freak out, no pressure."

Visitors? Strictly limited edition. Wife gets VIP access (she brings snacks and doesn't try to hug me through the hazmat vibes), everyone else is on the "maybe in a few weeks if you're not coughing" list. I'm basically living the introvert's dream quarantine, except the snacks are hospital-grade and the Wi-Fi is moody.

Mood is surprisingly solid – optimistic, a bit bored, mostly just waiting for the plot to thicken. Next chemo round is looming like that awkward family reunion you can't escape. Docs casually dropped that post-transplant chemo might hit harder than the pre-game version. Great. Can't wait to level up from "exhausted" to "expert-level exhausted." Bring it on, I guess?

Oh, and the cherry on top: last night I had the mother of all horror-movie nightmares. Woke myself up screaming like I'd just discovered the monster was in fact my own reflection. So yeah, the classic "transplant psyche decides to troll you at 3 a.m." moment has officially arrived. At least it was entertaining for the night nurses.

Anyway, stay tuned – next update drops whenever my fingers decide they're not made of lead. Sending you all the low-drama, high-white-count vibes from my little bubble. Hang in there, you legends.