r/mds

My dad was recently diagnosed with MDS and I’m still learning about the disease and what may have contributed to it.

We’re seeing Dana Farber soon to discuss treatment options including meds and possibly transplant and I’m trying to understand as much as I can before that appointment.

One thing I keep coming back to is the role of inflammation in diseases generally . My understanding is that many diseases start with some kind of inflammatory or cellular dysfunction process, and in MDS that seems to include some level of ongoing inflammation in the bone marrow potentially due to with triggers like prior chemo or chemical exposures that can damage DNA and disrupt normal cell function.

Things I’ve been reading about include red light therapy, acupuncture, diet changes, and certain supplements or herbs, though I know the evidence is limited and I’m not treating any of this as a cure. I’d really appreciate any insight, personal experience, or other approaches worth looking into.

Also I know this is a controversial topic and some people will come back and say “there’s no proof this works.” That’s okay….i don’t think our current scientific focus as a country really is on alternative remedies … the money is always in big pharma.

I’m mainly interested in hearing from anyone who has experience with MDS especially around inflammation, environmental triggers, and functional medicine/ complementary approaches that may help alongside standard treatment.

Hi everyone,

My dad (68M) was recently diagnosed with Myelodysplastic syndromes (MDS-spectrum disease) after years of low blood counts.

We just received his genetic testing results—- Mutations they found

• ASXL1 (x2)

• U2AF1

• IDH2

• PHF/PHF6

He also has chronic cytopenias (low WBC/ANC and platelets, mild anemia) and mild dysplasia, but no increased blasts (2%)

What we’ve been told so far:

• Not “low-risk” biologically due to mutations

• Not high-risk AML/MDS yet (no blasts, relatively stable counts)

• Disease appears driven by a clonal process rather than reversible causes

A rough estimate for years to live was around 5 years, 😔 but it seemed more like a general population-based estimate

Treatment problem:

Insurance is currently denying a medication because it is labeled as a “leukemia drug,” even though his hematologist says it is appropriate for his MDS and mutation profile. It’s $50k -80k a month

We are currently going through the appeal process…. Any insight on this is also appreciated.

What I’m trying to understand:

• How serious is this mutation combination?

- has anyone else had a similar risk profile who has survived it? This is really what I am interested in hearing. BMT looks like high risk from the stats I read online but I wonder if that’s because they are counting a population of more elderly sick people who drive up the mortality rate

• outside of BMT Any treatments that work well I should know about ?

• How often do insurance appeals succeed for off-label use of leukemia drugs in MDS cases?

Any insight from people familiar with MDS, hematology, or insurance appeals would be really appreciated. We’re trying to understand the real situation beyond the labels.

I’m absolutely broken 😞

Hi all,

My dad age 67 was recently diagnosed with with MDS

He has

ASXL1 (×2)

U2AF1

IDH2

PHF6

Has anyone else had similar high risk biology at a similar age and did you have a BMT? Looking for any guidance and stories you have

Thank you 🙏

Hello all

My dad was just diagnosed with MDS and of his bad mutations has two clones of ASXL-1. According to my research to date, this is an undruggable mutation… not much has been done scientifically to directly target this mutant.

Curious if anyone else has stumbled upon trials or any other promise in the direct treatment of this mutation.

I came across a Reddit thread (sounds like some greedy investors / big pharma people) indicating new trials for a Stella drug SLS009 has promise. Don’t know much more than that (link below)

https://www.reddit.com/r/sellaslifesciences/s/x2OG4Mb94w

Appreciate any other thoughts / knowing what others are coming across with regards to this mutation

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

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.

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.

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 --

in my previous post I told how my brother relapsed after 9 months post sct with nras, dnmt3a, runx1, ezh2 mutations. I talked with Dr he suggested for a haplo transplant with my dad.

I don't have option for clinical trials on the place we live in.

I tried to second opinion from another Dr but they also told same I am being hopeless now. I don't know what should do.

our Dr said he would give FLAG-GO as preconditoning chemo and later would do FLU+mel+ radiation to clear the marrow for second sct. but there is a lot of risk of VOD and organ toxicity. and then he would do second sct for my brother.

I don't know what can be. did anyone faced similar situation and how you guys were able to go through with it.

my brother had HR mds. he had sct last year in may 2025.he was given Flag ida pre sct. his sct was done on day 14 of flag as his disease was active. post sct he only had flt 3 positive which was later cleared with xospata.

he was on continuous maintenance with aza but after 9 months his mrd became positive on molucular level with same mutations that was there pre sct. he did not had any gvhd even after dli.

I don't know what do now everything was given to him .

he was given DLI last month but it had no impact . his reports showed 30% blast in his blood the day before yesterday. he had overt relapse now .

his muatations are Nras, runx1, dnmt3a, ezh2. Dr said there is not any targated drug for this .

Yesterday when we dicusssed this with Dr he said we don't have any option left. he said chances are very low to save him. he is only 23 years old. I don't know how much toll second sct takes on body.

when we forced he suggested very aggressive approach to eaither use CLAG-IDA or Flag-GO(which I don't know why he suggested as I read that is only effective with cd33 positive blast, correct me if I am wrong) .

he said he will start heplo sct conditioning on day 14 of regime with flu+mel + tbi. for this my father would be the doner.

I don't know if feels to far to be done and our family is in fear. I want to know if someone else also faced this similar.

does second sct with Heplo can be done for PT who relapsed in 9 months

what can be done ? is there any option left for him. we don't want to go to the route of second sct.

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

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 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

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.

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.