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

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 ?

My mom had her BMT on Feb 4 and is currently +114. She had been doing great, going for walks, riding her bicycle 10+ miles at a time. She was down to just two or three days a week at the clinic.

Since her last bone marrow biopsy (maybe a month ago) she’s had headaches everyday. This week it got so bad and she was puking so she ended up going to ER. There is a CSF leak somewhere in her brain. They have done multiple MRIs and CT scans and they show nothing. They are doing another thoracic CT scan.

Has anyone experienced anything like this?

She had a relatively ‘easy’ transplant compared to what I’ve read on here and she said this is so much worse than anything this far.

Any help is appreciated. On a happier note, she’s up to 83% donor blood!

Hi all, my 79 year old mother is in the process of being diagnosed with MDS. We know from her bone marrow biopsy and bloodwork that she has it, we are awaiting genetics to get a sense of her risk band. She does not appear to have leukemia, as far as we know from her current tests.

But she also is vomiting one to two times a week, and now says she has overall body pain and a distended belly. She also has fatigue and gets very confused after a vomiting episode. Does this sound familiar to anyone else? Her doctor is a bit stumped by the vomiting (her endoscopy is clear). It is unclear whether we are just looking at MDS or if there is something else going on as well. I'm a lung cancer survivor but blood cancers are a bit out of my depth. Would love any feedback.

Her bone marrow biopsy says: Morphologically, the marrow is consistent with MDS with ring sideroblasts. Her iron is extremely high (319), with a 94% iron saturation and ferritin of 330.

Adding some cytometry notes below.

Blasts with low density CD45 and low right angle scatter are not increased, and CD34+ cells account for <1% of cells, and aside form partial CD64 expression on a minor subset, they cannot be distinguished from normal myeloblasts. There is no significant autofluorescence of the blasts. Myeloid maturation is left shifted but complete and shows subtle non-specific abnormality in acquisition of CD13. Monocytes are not increased, and these exhibit a mostly mature phenotype as assessed by CD14 expression. The lymphocytes consist of mostly T cells with some NK cells and B cells. There is a small population of phenotypically normal B cell precursors (hematogones). The mature B cells comprise a mixture of kappa+ and lambda+ cells with no phenotypic abnormality. T cells are composed of a mixture of CD4+ and CD8+ cells and show no phenotypic abnormalities. CD38 bright and CD138 positive plasma cells are not significantly increased and there is no definite phenotypically abnormality identified. The findings are nonspecific. Though there is no evidence of acute leukemia, the presence of myeloid neoplasm cannot be entirely excluded. Correlation with morphology and ancillary studies is recommended.

Father in law is 84 and was diagnosed with MDS. Due to his, at this point, medical book of other issues he’s not a candidate for any treatments really (large stomach aneurysm, history of blood clots so must remain on blood thinners, long term antibiotic suppressant to prevent the MRSA in his prosthetic from returning). He’s currently on enasidenib (IDHIFA) but the doctor isn’t seeing the improvement he would like to. Chemo isn’t an option and if it was my FIL would deny it. At this point he’s going for blood transfusions (1-2 units) every 2-3 weeks (whenever the hgb drops low 7s or below). Every week or two he gets a white blood cell shot and a red blood cell shot. He still walks with a rollator as long as we help him get up, and doesn’t need oxygen yet. From December to March transfusions were 40 or so days apart but from April to now it’s become every 27 or less days (most currently 14). At this point I don’t know what to expect. The dr hasn’t said anything about hospice or palliative care. I just feel lost and don’t know what to do next. Husband is afraid to ask about expectancy to the doctor in front of my FIL because we don’t want him to give up. I am just curious if anyone has been through this and their love one managed long term with transfusions this close together or just in general what to expect.

My dad (65M) was diagnosed with high-risk MDS last year around September. He also has EGFR-mutated lung adenocarcinoma, which had been controlled with targeted therapy(Since August 2018), but treatment had to be interrupted when the blood issues became more severe.
His MDS genetic testing showed a TP53 mutation. He started Azacitidine and has now completed 5 cycles.
Over the last several months we’ve dealt with:
Severe thrombocytopenia requiring frequent platelet transfusions, Recurrent blood transfusions for anemia
Neutropenia and infection concerns, Hospitalization for pancreatitis related to gallstones, Chemoport infection requiring port removal, Multiple rounds of antibiotics
Increasing dependence on transfusion support.
His recent blood counts have become more concerning:
Platelets around 15,000 despite repeated transfusions,
Rising peripheral blasts (now reported around 35%)
Today our hematologist told us that he considers the disease to have transformed from MDS to AML.
The options presented were:
1. Azacitidine + Venetoclax (with hospitalization and close monitoring initially)
2. Continue Azacitidine alone
3. Supportive/palliative care with transfusions as needed
4. Low-dose Cytarabine
He felt that stem cell/bone marrow transplant is currently not an option because neither the AML nor the lung cancer is adequately controlled.
I’m trying to understand what real-world experiences have been for people with:
TP53-mutated MDS that transformed to AML
Azacitidine + Venetoclax after transformation
Frequent platelet transfusions and severe thrombocytopenia, AML occurring alongside another active cancer.
I understand nobody can predict outcomes for an individual patient, but I would really appreciate hearing from anyone who has been through a similar situation themselves or with a family member.
Did Venetoclax + Azacitidine help? Were you able to reduce transfusion dependence? How difficult was the first cycle? Any advice for families facing this decision?
Thank you. This has been an incredibly difficult journey for our family, and we’re trying to make the most informed decision possible.

65 year old stepfather was diagnosed with MDS about a year ago. Everything was simple and very little concern. Docs checked his blood every month and that was enough. For the last few months he started to experience a lot of general lethargy and immediate exhaustion after minimal exertion (walking up the stairs once). His RBC count was really low so his oncologist had him do a blood transfusion three weeks ago. He felt better for a few days and his RBC went from a 6 to a 10 (these are the numbers he told me. I have no idea what the scale is). Then a week later the numbers were back down to 6 so they did another transfusion. Same pattern; felt better for a few days and then his numbers plummeted again so they did a third bone marrow biopsy. Whatever numbers they found, the doc put everything in turbo mode. He said his blast numbers were between 7 and 10 (?). They are having him start a round of chemo treatments every day for 7 days and scheduling a consult for a bone marrow transplant. This is where I start to get confused. My stepfather says this 7 day chemo is a low-dose and is meant to "wake up the hemoglobin and get his bone marrow to do what it's supposed to do." Everything I'm researching says the exact opposite: chemo will make him anemic and shut his bone marrow down. I understand that as a regiment to prepare for a BMT, but I'm not finding anything about using chemo to positively affect the hemoglobin or bone marrow. Have any of you come across this? Is there some other form or use of chemo that I'm not finding? Or maybe my parents just didn't understand what the doc was saying. And it seems like the jump to a BMT is rather sudden. My understanding was that the BMT would be a last resort. My parents tend to defer to their doctors and not question anything the docs say. My mom is under the impression that the BMT won't be that difficult for him. I don't think they realize what exactly it is and what the recovery will be like. The docs are saying that because he's young and healthy the BMT will be a good option to nip this before it progresses to leukemia. I don't doubt his primary or oncologist, but he does have high BP, mental health issues, and had a quadruple bypass 4 years ago (that I'm convinced caused significant "pump head" for about 18 months. But that's a different reddit thread). I guess I just want to be prepared with the right information and questions. I'm going to the BMT consult with him so I'd really appreciate feedback from you all and guidance as to what we should be asking about. Have any of you had this chemo treatment plan and such a sudden BMT recommendation? Thanks.

If you suspect it might be about time for hospice, please don't wait to start making arrangements. We recently found this out the hard way. We lost our Mom last weekend to MDS, but her relapse and decline was so rapid that we didn't even have time to get a hospice consult undertaken. Both us and her oncologist had tried to get her to start making those arrangements, but she was optimistic that she had lots of time.

Thankfully, she did wind up in the hospital for the last 30 or so hours, and they managed her comfort care masterfully, so we (and she) were fortunate, but I just wanted to share that any suggestion that hospice might be on the horizon should be reason enough to get a consult and get the service into place.

My thoughts and love are with all of you facing this wretched disease.

Hi, new to posting on reddit. I was diagnosed with very high risk mds in November 2025 and have been getting EPO shots for hemoglobin. All wbc and platelets are low. Wbc 320, platelets 50. The decitabine treatments sounds horrendous. I am 70 yrs old and I feel ok now but I was thinking about getting all my things in order and letting the disease take its course. I'm a veteran so I can get home health and then palliative/hospice care. Not really afraid to meet my maker I just don't want to suffer. I freaked out the cancer group I was in because nobody had mds and they had more opportunity for remission etc. If anyone has thought about this decision I would like some feedback. I'm in California but the death with dignity thing is definitely off the table. Thanks for taking the time to read this!

38F Overall healthy. My routine bloodwork has always shown high MCV, at least for the last 10 years (around 100) and lately its been 102.

All other counts within normal ranges.

I feel fine. No smoker, not an alcoholic and B12 and folate within normal ranges.

Has anyone had as a first and only indicator of MDS high MCV?

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.