Myelodysplastic Syndromes

Why is my iron so high with low hemoglobin?

I finally got my doctor to do an MRI scan because my ferritin and iron has been so high with my hemoglobin being low. My MRI came back a 6.8 which from what I read means my liver is oversaturated moderately with iron and my iron came back at 360 which is high meaning that I have an overage of iron in my blood. Waiting to see what my hematologist oncologist has to say on my next appointment.

Can blood tests alone diagnose cancer or is bone marrow biopsy needed?

Can a diagnosis be obtained by blood tests only or does a bone marrow biopsy always need to be done ?? Thanks in advance for your help.🙂

How to cope with MDS diagnosis fear at 78 years old?

I was just diagnosed with MDS on May 11, 2026 and I’m scared to death. Right now it’s low grade and I’m 78 years old.

Has anyone else developed t-MDS after cancer treatment?

I have t-MDS due to chemo I received 9 years ago for Sarcoma. Anyone else have t-MDS?

Should I push for stem cell transplant with TP53 mutation MDS?

I am 71 and diagnosed with MDS inJan of 26. Bone Marrow biopsy positive for TP53; ETV6. Placed on Inwovi which in 2 sessions has my platelets normal and HGB up to over 10. White blood cell down. Doctor is very happy. Does anyone have experience with long term Inqovi. I am thinking with the genetic mutations I should push for stem cell. Any input?

Can you get a stem cell transplant with normal blood counts and no symptoms?

Anyone undergone a stem cell transplant with normal blood counts and no symptoms? I was diagnosed in Nov 2025 with MDS TP53 mutation, rare variant, 80% VAF, and complex karyotype. But my blood count is normal, blasts 1-2% and no symptoms. I've seen 7 docs. They all encourage me to get a transplant now.

How do you cope with fatigue and weakness during chemotherapy?

61 yr old male... Diagnosed 10/25... Getting ready for 3rd round of Chemotherapy with Azacitidine. Blood tested 2 times a week. If hemoglobin goes below 7.0, then blood transfusion will be ordered. Haven'had a transfusion now in 3 weeks, numbers seem to be rising a bit. I am scheduled for 6 rounds of chemotherapy, maybe more. I do have fatigue, shortness of breath, and lots of weakness. All I do know is that this sucks.

What to expect when transitioning from MDS treatment to palliative care?

I’m a 83 year old male who worked full time until May 2023 when I was diagnosed with anemia! After a couple of bmb it was determined that I had MDs-EB. Subsequent testing reported two mutations (RunX1 and FL3B1). I participated in a clinical trial from 05/28/2924 to 01/31/2025. That didn’t seem to work (SEGE1920-AZAcitidine with SEA-CD70) 2/10/2025 chemotherapy: azacitidine & Venetoclax (200 mg of Venetoclax with 200 mg of Fluconazole). First cycle 28 days bmb results 2 to 3 % blast. Cycle 3: 05/092025 - Venetoclax reduced to 14 days due to profound delay in recovery. Cycle 4: 08/28/2025 - Venetoclax reduced to 10 days due delays in recovery. Latest bmb reported 12.4% blast Currently on twice a week count checks and receiving platelets and or blood as necessary. Currently looking for a research facility but have requested palliative care services!

What hemoglobin levels typically trigger MDS treatment to start?

Diagnosed with MDS 11/23. Been having regular blood tests every 3 months to monitor levels. Is there a standard level of RBC and hemoglobin where treatment starts ?

Should I continue MDS chemo treatment at 78? Quality of life concerns

I am a 78 year old male with relatively decent health for my entire life. A couple of months ago I noticed blood bruises on my arms and didn’t think much about it. I thought it was from bumping into things or from playing with our dogs. My primary physician ordered some blood tests and eventually sent my to see an oncologist. He ordered a bone marrow biopsy and that, along with all the blood tests, showed that I had developed MDS. Did not see that coming, especially as I learned about this disease. I have now had one round of chemo treatments consisting of 14 injections in my abdomen in 7 days. I am now on a 20 day break before starting round two. I have decided on the Mediport method as the injections are very painful after a few days. In looking ahead, I am wondering if I should even continue with this as I feel terrible most of the time. Given that there is no cure and the quality of my life is definitely declining, I am not sure how to proceed. I don’t want to be a burden to my family but feel increasingly unable to contribute much to the household. Not sure how to proceed. Let me know if anyone else with MDS can relate to what I am feeling. Thanks for reading this, Mike Beutel