Hypocellular MDS

[carolyn]

Hi all,

I have now had the results of my BMB and have been diagnosed with hypocellular MDS which is very rare for my age (25 years old.) I could do with some help translating my results so here goes:

Bone marrow aspirate was heamodilute (too few cells?) Bone marrow cytogenics normal. Trephine biopsy slightly hypocellular ( 60%) Trilineage haemopoiesis, disorganised erythropoiesis, no excess blasts. Evidence of dysmegakaryopoiesis ith hyperchromasia and hypoblated and monoblated megakaryocytes. Reticulin Grade 1.
Serum autoantibodies negative and serum immunoglobulins normal.

I've been told to carry of living 'normally' as my counts are currently only just below normal, i am trying to stay positive about the future but I find it hard at times with a diagnosis like this at my age.

Thanks,
Carolyn

[Birgitta-A]

Hi Carolyn,
It is easy to understand that it is difficult to stay positive with MDS at your age! Many of your results are very good.

“Haemodiluted” means diluted with blood – it is difficult to analyse the bone marrow when it is mixed with blood.

“Cytogenics normal” means no chromosome aberrations (very good ).

“Slightly hypocellular” means a little too few cells.

“Trilineage haematopoiesis” describes how the production of the three types of blood cells is functioning – red blood cells, white blood cells and platelets.

“Disorganised erythropoiesis” means disorganised production of red blood cells.

“No excess blasts” means not more immature blood cells than normal (very important and good ).

“Dysmegakaryopoiesis” means that the megakaryocytes - the cells responsible for the production of platelets – don’t look quite normal.

“Reticulin grade 1” means that there are a little more fibers than normal.

They don’t mention the white blood cells – they are probably normal.

Hopefully your counts will continue to be OK for a long time!
Kind regards
Birgitta-A
Dx MDS May 2006 with severe fibrosis and very few cells. Asymptomatic with supportive treatment

[ann]

Your age should be a plus. A friend of my husband told us last week that one of his sons was diagnosed with MDS in his early 30's and was able to have a bone marrow transplant from his brother and is now cancer free. He goes back yearly to a hospital in Wash. state but feels he is cured. He is a minister and feels that the more prayers said for you, the better your outcome. So do I. I will pray for you and keep thinking good thoughts. Laugh as often as possible, it sure makes you feel better. Get some comedy movies and the sillier the better. As good as medicine.
God bless.
ann

[sttery]

I am a 75yr. old female and was diagnosed 2 yrs ago with Hypocellular MDS. I was put on 300 mg. of Cyclosporin and all my counts came into normal range. The dose was lowered to 200 mg. and my counts remained normal. For the past year, I have been on 100 mg. of Cyclosporin andmy counts are normal. I was originally told that my counts would never be normal. I was tempted to go off Cyclosporin completely, but afraid to do so. Has there ever been a case of a patient going off Cyclosporin and remaining in normal range. Thank you. Terri