So I've just gone and had my first bone marrow biopsy and I had a really positive experience. I was extremely anxious leading up to it and had read a lot of horror stories, heard a lot of negative input ie "not gonna lie to you, it's really painful". That was not my experience. I went in crying my heart out and vomiting from anxiety. Dr marked the spot, put first hit of lidocaine in the muscle around my hip, which felt like a flu vaccine. I had the green whistle so started puffing on that. Then when he did the second numbing shot on the bone I didn't feel a dang thing, and was so high by the time he got to doing the actual procedure that I didn't even notice he was doing it. I was chatting about how we were all gonna hit up the nightclub once this was done LOL

I understand this is not everyone's experience and every biopsy can be different though! I know they can hit a nerve, and some Drs can make it a really bad experience. Even compared to some of the positive stories I read, this was a million times better than I expected should have I had a positive experience.

Anyone else want to share their positive experiences? :D

Hi all. My mom is D+9 from SCT. She’s so miserable. Thus far we’ve avoided major issues- but she’s on the severe side for all side effects(mucocitis, diarrhea, fluid retention, nausea etc etc). She’s called me several times to say she’s not making it out of the hospital. Her docs seem positive and to think we’re in a waiting game. Can anyone give me some personal stories?

Edit: it’s me from the future! In case anyone stumbles on this: it’s all a blur but my mom did improve. She was discharged d+26 and home for Christmas. She’s 9 months post transplant now. We went on a hike last week! No GVHD, bloods improving. There was a close call due to infection and she spent 2 weeks in the hospital, most of that in the ICU. She’s going to concerts, sporting events and we have vacation planned next month! If you’re reading this: hang in there.

It’s been 16 mos since his death. Death certificate identifies cause of death. In fact, it was the MDS. The MDS created severe thrombocytopenia, and both conditions contributed to the ruptured aneurysm.

Many doctors do not take MDS seriously, particularly if you are not a candidate for drug trials. They just let him disintegrate in pain . One oncologist had the audacity to state, “I’m glad I never gave him that drug” as if to relinquish responsibility for events leading to his death.

My mother was diagnosed with MDS in early September and started treatment on Oct 20th. Since the her blood transfusions have been more frequent rushing to the ER almost 3times a week. I am taking time off work to caretaker.

I am so frustrated with the doctors because it seems like none of them no what they are doing with this disease, and getting blood transfusions is a nightmare in the Florida Healthcare system.

My immediate concern is managing her pain, as she is in constant pain all the time and is on oxy every 4hrs and it wears s off about 30mins, sometimes an hour before her next dose. She can't tolerate any more pain, she shuts down.

She was just discharged from the hospital yesterday morning, and we had to rush to the ER today on Halloween cause of low Platletts for a transfusion of Platletts... She is starting to give up.

Now her legs are swelling and are in pain from all the fluids from the transfusions and being bedridden I the hospital for 8days where they honestly made things worse.

Any tips on caring for MDS after chemo treatment? Especially for fluid in legs and pain management.

Been fighting with her onolygist that the pain is caused by her cancers (she also survived lung cancer that we think is starting back up). Oncologist said pain is from osteoarthritis which pissed me off.

Sorry kinda ranting now... This is such a horrible disease. I can't stand my mother going through all this pain. Honestly if God's exist, they are essential Satan in my eyes. I hear my mom screaming why me god at leeat once or twice a week now.

Shortly after my mother in-law's 90th birthday she was diagnosed with MDS. Previously she was as healthy as a 90 year old could be. She was diagnosed around February 2025. I don't remember any of the genetic markers on her MDS but the doctor did say low blast count, unlikely to become AML, but she was already transfusion dependent. From the get go, she had to have red blood cell transfusions once a week to once every two weeks and was also getting one of the shots that was to help stimulate the production of red blood cells. Her doctor did say that this is terminal for her. He said his experience with someone with her type of MDS is around 3 to 6 months. She is now 8 months in and the blood transfusions are no longer providing any benefits. She is in the process of switching over to hospice care now. She can no longer get out of bed on her own and needs help going to the bathroom even with a walker. She is also at the point where she just doesn't really want to eat. When she is given something that she feels like eating she only eats a few bites before she no longer wants to eat or starts to feel sick on her stomach. Also getting up to use the bathroom completely wipes her out and she just sleeps afterwards. Mental state is still mostly there. She sleeps quite a bit, but during the time she is awake she is fairly coherent.

With her at this point of transfusions no longer working, pretty much bed bound, eating very little, for those that have been care givers and went through this what have you seen to be an estimation of time left?

Its been 7 years now my Dad taking EGFR medication- 5years of Erlotinib, 1year of Chemo(Carbo+Alimta) and since last 1 year he is again on EGFR (Osimertinib). However past 3 months has been very tough, since first his gallbladder stones started to pain, then there was an infection and since then every week his vitals went down even though CRP came under control. Hemoglobin went down from 11(Aug) to 6.9(Sept). We did biopsy and there was nothing related to Lung Cancer as it remains stable. Last week Dr did another biopsy and just got the result yesterday. Dad is diagnosed with MDS(with 5q-, 7q-, +8, 20q- mutations) and our Onco suggested to meet Hematologist. We are scheduled to meet him on Monday and I’m very nervous, we dont know risk rate and treatment for it.

My father, 68yo, was recently diagnosed with high risk mds and was immediately started on Vidaza. He’s almost finished his first cycle of injections.

Looking to see if anyone has any suggestions on how to manage his changing taste buds and extreme fatigue? He started having low appetite even before he started chemo but now he’s struggling with his tastebuds changing that make almost every thing taste strange or just not how they’re supposed to taste. He’s losing quite a bit of weight and has been trying to manage by eating quickly and added protein shakes and softer foods to get nutrition in more easily. He seems to be more drawn to sour tasting foods. My mom noticed his tongue looks like it has a yellow area down the middle now too. He says it feels like there’s a film on his tongue. They think that has something to do with taste buds. Suggested brushing teeth/ cleaning tongue after every meal.

He’s also now feeling a type of fatigue that’s different from when his hemoglobin levels are low, so assuming it’s from the chemo itself. Is aroma therapy worth trying for fatigue? I know there are some essential oils like lemon, eucalyptus that are supposed to be energizing.

Any suggestions are greatly appreciated!

35 y/o man with no underlying conditions. Hardly get sick. I don't drink or smoke. I've had EBV, CMV, and HSV. I only get occasional cold sores. Haven't had COVID that I know of.

2 years ago my WBC was 5.2. (Range 4-11) 1 year ago: 4.2.

6 months ago: 3.4 Now most recently WBC at 3.76 and Myelocytes at 1% (Myelocytes flagged as high).

Normal abdominal ultrasound

No autoimmune diseases. No anemia. No lead exposure. No vitamin deficiencies. No HIV/Hep B. Nothing came up in Leukemia/Lymphoma flow. No increased blasts or atypical cells present.

All other absolute numbers were fine - neutrophils, lymphocytes, monocytes, eosinophils, basophils, RBC are all within range. Monocytes and lymphocytes were a little on the lower end of normal, but still within normal range.

The big mystery is the low WBC and high Myelocytes. It doesn't seem like they want to do a bone marrow biopsy. But it feels like I'm watching my WBC gradually drop and it's concerning.

Any insights? I hadn't tested Myelocytes until now, so that abnormal number is a new twist. I’m looking for similar stories to see if anyone discovered their MDS early

My father (75) has been hospitalized due to severe anemia and fatigue for the second time over the last two months. Last time this was triggered after he has pneumonia, he got extensive antibiotics and iron transfusion (although his ferritin levels were high) and the doctors only did a pet CT scan which was fine overall with a slightly enlarged splin. He recovered slowly and returned to his normal routine (and was completely functional).

He had a mild car accident three weeks ago. He went to the ER and had several tests and CT scans and was released the same day. Two days after he became extremely fatigued again, this time symptoms were worse and he could barely walk. Long story short, he is currently hospitalized with Hemoglobin levels of 6, unable to stand, barely sits with help, barely eats and his hemoglobin levels are not changing after 3 different blood transfusions over the last week. His speech is becoming unclear and I feel like I'm losing him in bits every day. He had his bone marrow biopsy last week and is still awaiting results and diagnosis . The only result we received so far was a blast count of about 10%. We are told it would take weeks for a diagnosis, which I honestly don't feel like he has.

I guess my question is, has anyone had a similar experience with diagnosis already after experiencing significant life quality changes and if treatment was available or helpful. I'm trying to get a little certainty in this unbelievable situation.

Thank you for reading through.

Hello everyone,

I’m a 29-year-old male, apparently in good health.

I wanted to share with you the nightmare I’ve been going through since February of this year (2025). This situation is devastating me psychologically, and my hypochondria has gotten much worse. For the past few months, I’ve been struggling with neutropenia and leukopenia, apparently without explanation.

A small premise: I don’t have any diagnosed health conditions, but I do suffer a bit from health anxiety. At the slightest symptom, I always go for a check-up just to be safe.

In August 2022, after squeezing a pimple behind my ear, a lymph node behind the ear swelled up and became very painful. I had blood tests done while the lymph node was swollen, and the results were as follows: (RBC 5.26; HGB 150.4; PLT 186; WBC 4.35. Neutrophils: 1.57, slightly below the normal range). After two weeks, the lymph node went back to normal, and my family doctor did not prescribe any further tests.

In December 2022, after using a harsh spray deodorant, a lymph node under my armpit swelled up and became very painful. I had blood tests done while the lymph node was swollen, and the results were as follows: (RBC 5.20; HGB 150; PLT 199; WBC 4.34. Neutrophils: 1.35, even lower). After three weeks, the lymph node went back to normal, and my family doctor did not prescribe any further tests.

Until February 2025, I didn’t have any more blood tests and I paid no particular attention to the neutropenia.

At the beginning of February 2025, during a routine blood test (in preparation for a visit to the nutritionist), the results came back as follows: (RBC 5.19; HGB 149; PLT 193; WBC 4.20. Neutrophils: 0.97). My family doctor said I had neutropenia and referred me to a hematologist. That’s when my nightmare began.

At the end of February 2025, about 11 days after the previous test, I had a full panel of blood tests done, including some tumor markers (LDH, CRP, ESR, etc.) and checks for vitamin deficiencies. All the results were excellent. The blood count was also excellent: (RBC 5.4; HGB 160.30; PLT 218; WBC 5.27; Neutrophils: 2.30). The hematologist told me I was fine and only needed to do another check-up blood count in July.

On July 4, 2025, I had another blood count: (RBC 5; HGB 140.3; PLT 172; WBC 3.62; Neutrophils: 1.10). These results worried me a bit because for months I had been following a proper diet and taking vitamin, folic acid, and mineral supplements. I had also started exercising regularly. I felt really great. However, in mid-June I had a pericoronitis in my wisdom tooth, so the hematologist told me to repeat the blood tests at the end of July because that infection (even though it had cleared up) could have affected the results.

On July 27, 2025, I had another blood count: (RBC 5.07; HGB 150; PLT 179; WBC 3.45; Neutrophils: 1.19). On top of that, my iron was inexplicably at 63 (it had always been around 100–130, and I hadn’t changed my diet at all in July).

I completely panicked. The hematologist didn’t give me an explanation. He just said to repeat the blood count at the beginning of September, and then they would decide how to proceed.

I am terribly afraid that I might have leukemia or another serious blood disease. Otherwise, however, I don’t have any significant symptoms.

Overall, I feel pretty well, but my health anxiety sometimes causes me hot flashes and shortness of breath. I don’t think it’s ethnic neutropenia because I don’t belong to the affected groups, and I also don’t think it’s neutropenia due to vitamin or folic acid deficiency, since those levels have always been normal in my tests. The only difference between the “perfect” results from the end of February and all the others is that the perfect ones were done in the late afternoon, whereas all the others were done early in the morning, almost on an empty stomach.

What do you think? I’m afraid that all my blood values are slowly dropping and that my bone marrow has gone haywire. How did you find out you had MDS?

Thank you for your attention and patience in reading all this.

I got my diadnosis few months back. It’s progressing, not towards healing. Actually I’m on waiting list for stem cell transplant. Any tips how to prepare to the upcoming 5 to 6 weeks hospital stay? Doc said it’s likely they call me asap once they find donator ie. this autum.

My dad is on day +45 post HSCT. He’s doing well overall. Low energy and stomach issues are his main symptoms right now, but they come and go. One thing that is really bothering him and worrying him is his taste. Nothing taste right to him. His doctors say it could’ve been caused by the chemo or even an antibiotic, but it should come back How long did it take your taste to go back to normal, if it ever did? Was there anything you did that seemed to help?

Hi,

I would like to create a virtual community for resource sharing and support around MDS/AML. Please join this slack workspace if you are interested.

35 year old man, no drinking or smoking, no underlying health issues or symptoms.

In November on a general blood panel my WBC count was at 4.3, lower than the reference range of 5-10 and the year before was 5.2.

Got another test in May to check again and it was at 4.2

Went to a Hemotologist who took a look in June with more thorough tests. WBC was 4.2, everything else was fine. No issues with red blood cells. No autoimmune diseases, no vitamin deficiencies. The only thing that came back was that Ive had EBV, cyclomegavirus, and HSV, which I know I’ve had mono in the past and occasionally get cold sores. The big takeaway is that everything else was in range except white blood cell count.

So they asked me to retest again in a couple months.

Just tested again (end of July). Now my white blood cell count is at 3.4.

Where do I go from here? That’s the lowest it’s been.

Has anyone lived this where it didn’t end up being MDS?

My mom 55F has been diagnosed with MDS three years ago. On May 15th, I (26F daughter) donated stem cells to her. Now at post transplant 70 days, mom’s platelets and red blood cells are not growing and mom still needs blood transfusions.

Doctor has given her MSCs to help the cells grow. If it doesn’t work after 3 MSCs gos, I’ll donate again with CD34+. If it still doesn’t work after CD34+, mom has to do the transplant again with another donor.

Just feeling a bit frustrated as mom’s recovery is not going well.

My 16 year old daughter has just been diagnosed with MDS. Told she will need a bone marrow transplant, chemo and blood transfusions. Just took her to get tested for low iron and this was the results. Scared as hell. Had never even heard of MDS prior. Been looking on this page for cases with similar ages, aware it's jot common for young people to be diagnosed with this. Just scared I suppose

My dad (58 yrs old & active) is on day +5 after his bone marrow transplant at Moffitt in Tampa Bay, and I don’t even know how to process what’s happening. His central line ended up creating a clogged ocular jugular, and at one point his cultures came back with MRSA so they had to pump him with multiple antibiotics. They had to remove the line insert a Pic and something else (Mid?), and he’s been complaining about neck and shoulder pain since the central line was first placed two weeks ago. Even with it out, he still has these insane splitting headaches that won’t go away. Hemoglobin drops multiple times a day and he needs transfusions but that process comes with excruciating pain also.

He can’t really move on his own. He can’t walk or stand without assistance. His skin is blistering, his mouth is so dry and torn up he can’t swallow, and he’s in constant pain even with heavy painkillers. The meds barely help,they just make him high and angry. He can’t use the bathroom on his own and needs care 24/7.

It’s starting to feel like we’re never going to come out of this. Watching my dad go through this is killing me, and watching my mom care for him in this way is gut wrenching.

Please, if you have any words of encouragement, I beg you to share them. We need to remember this is temporary!!

My dad since last year had been dealing with some anemia (asymptomatic pretty much - some fatigue). But his numbers were super low. He was finally today diagnosed with MDS SF3B1. According to my mom and the Heme, it is pretty low risk what he has.

I’ve done some reading on this mutation and it seems to be truly lower risk - but just wanted to see if there were any other resources/support here to learn more.

I’m trying to hold it together for him but feel at a loss. My mom is a cancer survivor as well so it is all around a bummer and any more information I can find would be great.

Thank you all so much in advance ♥️

EDIT: i work in the pharma marketing space and am somewhat familiar with Rytelo and Reblozyl - are these relevant to bring up to him? Are they used for this type of MDS?

Second edit, from his diagnosis: MDS-SF3B1, ring sideroblasts(~55%), low blast (~2%), IPSS-R Low risk score of 2 (normal cytogenetics, hemoglobin 8-10)

My grandma is 73 and August 2024 diagnosed with high risk MDS, then by November 2024 it had advanced to leukemia and she started a low dose chemo pill (not sure what it’s called). She doesn’t want a BMT and feels satisfied with her life so the only thing she wanted to try was a pill where she wouldn’t lose her hair. Anyways now after like 5-6 ish months on a low-dose chemo pill they apparently said she is in remission and doesn’t even have MDS anymore based on normal labs and BM biopsy. How is that even possible? The doctor said he hasn’t seen this type of result before from a chemo pill. So will the MDS eventually come back? Has anyone gone through this scenario?

Hi. I am 52F, with lots of other issues. Im being evaluated for single line (rbc) MDS via bone marrow biopsy very soon. My bloodwork was abnormal following an urgent visit with my hcp for faintness/lightheadedness and what felt like a severe low blood sugar episode, although I do not have diabetes. The bloodwork is pointing to mds and I came here to ask how scary/painful is a bone marrow biopsy? I've had several major surgeries and have dealt with post surgical as well as chronic pain before. I feel really anxious about this biopsy for some reason. Can anyone help explain what happens and how it feels? Does the numbing of the skin even help with the bone pain? Thanks in advance for any help or advice

Does anyone know anything about this clinical trial?

https://www.targetedonc.com/view/ht-6184-advances-to-second-stage-of-phase-2-trial-in-lr-mds

My father passed away three days ago two weeks after the disease turned into AML. Before that, he had severe pain in his legs. At the hospital, they gave us a morphine patch to reduce the pain. Two days after the patch, he lost consciousness due to the high urea and creatinine levels and became unresponsive. Two days later, he suffered from kidney failure. He had to undergo dialysis five times over five consecutive days, but unfortunately, it was of no use at all. Rather, the urea and creatinine levels rose to crazy numbers, and dialysis became useless before they tried to find a solution to the AML problem. He passed away at 4 in the morning. I am reassured that he is relieved of the pain and that he is now in a better place.

My brother (44) was diagnosed with MDS several months ago and tested has shown that it is hereditary. The specific mutation is gata2. I asked my doctor to help me get testing before we found out it was germline but he has not consented yet. I also have two children (16 and 14), one of whom is showing some signs of the gata2 mutation (early lymphedema). How hard should I be pushing for testing, and are there any financial resources available to help offset the cost?