NEW Need help with MDA-MLD

[mmaliff]

Hello Friends,
I am looking for any help with my condition. I have just started to try and understand. i would be so thankful to anyone that could read my results and give me feedback
My MDS has trilineage dysplasia without an increase in blasts.
My CBC: HGB: 11.7 g/dL, MCV: 88.6 fL, WBC: 2.7 K/uL (ANC: 700/uL), PLT: 203
-i have Markedly hypercellular marrow for age (80-90% cellular)
-Megakaryocytes are mildly increased in number and dysplastic with frequent small hypolobated and hyper chromatic forms, as well as those with abnormal separation of nuclear lobes.
-The myeloid:erythroid (M:E) ratio is mildly increased.
-Prominent lymphoid aggregates are not identified.
-Reticulin stain shows a patchy mild increase in reticulin fibrosis.
-Trabecular bone has focal osteosclerosis.
-CD34-positive blasts are not increased
_28% promyelocytes/myelocytes, 47% maturing granulocyte forms, 19% erythroid forms, 4% lymphocytes, and 2% monocytes
-maturing myeloid elements demonstrate a
marked decrease in side scatter as well an abnormal CD10/CD11b/CD13/CD16/CD33 pattern, all of which are immunophenotypic evidence of dysmaturation
thank you! Michele MDS-MLD

[DanL]

Michele,

I will try to help with the few items that i recognize in your report.

Trilineage dysplasia means that there are problems with all three blood lines - platelets, red blood cells, and white blood cells. Dysplastic simply means abnormal - either in shape or function.

No increase in blasts is generally a good sign and means that you don't have any immature undifferentiated blood cells. With MDS, there are generally three categories - less than 5%, which is considered normal or close to normal, 5-10% which is increased, 10% to 20% which is very increased, at more than 20%, the MDS is reclassified as AML.

Markedly hypercellular marrow means that your marrow is a little more dense than it should be when adjusted for your age. The general rule is that you would take your age from 100 to identify the expected number. Example if you are 60 years old, you would expect to have 40% cellularity, give or take a few percentage points.

The myeloid to erythroid ratio is simply the number of white blood cells to red blood cells in the marrow. A normal ratio is a wide range from 1.2:1 all the way to 5:1. An increase in this number could indicate an increase in white blood cell production, a decrease in red cell production, or a combination of the two.

Increased megakaryocytes (platelet cells before they are released to the blood stream) means that you are producing more platelets than would be expected. Hypolobated means fewer lobes on any given platelet than expected. The other language I cannot really explain other than they are abnormal.

Prominent lymphoid aggregates not being found is a normal reading, meaning that it is not really prognostic of any problem.

Increased reticulin fibrosis (scarring) means that your bone marrow is experiencing some degree of stress that is causing damage to the bone marrow. It is not uncommon with MDS, but the majority of MDS cases do not have fibrosis - I did - Fibrosis is graded generally from mild to moderate to severe and may include very severe. MF - 0 to MF - 3. The presence of fibrosis has an undetermined importance with MDS as the primary disease.

I don't really know the prognostic importance of osteosclerosis of the trabecular bone.

CD34 is a protein that is used to identify a certain type of blast cell.

28% promyelocytes and myelocytes is usually an indication of some form of marrow stress. normal levels are under 10% total. promyelocytes and myelocytes are white blood cell (granulocytes) precursors that have started to differentiate, but have not finished forming.

the CD10/11b/16/33 panel appears to be a cytogenetic testing panel used to help identify MDS.

I hope this helps, but please let me clearly proclaim that I am not a doctor of any sort, just another MDS patient.

The key is that you get to where you and your doctor are sure of the diagnosis and the treatment options you have going forward. All of the details are more like measuring sticks to determine where the disease is now, and whether it is progressing slowly or rapidly. Try not to get too caught up in any one element as MDS is a complex disease and the important components are how you feel, you are dealing with the disease, and working through treatment options that work for you.

If you are not already at an MDS center of excellence you may want to seek out a referral to either receive care or coordinate care going forward. Almost everyone that I have talked to believes that they have benefitted from this approach.

MDS is a lot to take in at once, so give you and your family time to adjust, make sure you keep an open line of communication with your doctors, feel free to push them on questions about diagnosis and treatment options, and always be your advocate.

I am sorry about the diagnosis, but glad you have reached the marrow forums.

Dan

[mmaliff]

Dan

Thank you so very much!!! You cleared up bunch a of the unknown for me. I have very weak legs now and would like to know if you have ever had or come across others with this problem? Thanks for your time and kindness‼️
Michele.
MLD or rcmd Yale hospital. Watch and wait 🙃

[Cheryl C]

Hello mmaliff. I'm sure all of us on this forum can relate to what you are going through right now with a new diagnosis and so much to learn. Dan's knowledgeable explanations are so helpful.

I often had weak, shaky legs when my blast count was above normal. However, I didn't let it stop me walking. In fact I often found that the weakness would disappear after walking for a while. Exercise for MDS sufferers is still very important for keeping our blood circulating, unless one is incapable of course. My weak legs went away when my blasts dropped back into normal range.