Is blast % alone enough to diagnose with MDS?

[Sarah]

My name is Sarah.

My mother-in-law was diagnosed with MDS (RAEB2). The bone marrow biopsy showed blasts at %12 (Score 3 based on the IPSS-R). Hemoglobin (10), ANC (0.24), and Platelets (103) all score 0 (IPSS-R). Her Cytogenetics results are not out yet. A doctor already diagnosed her with MDS RAEB2 and gave her 9 months to live and suggested no treatment is available unless she (god forbid) progressed to leukemia (AML) then we can treat her with Chemo!

Can he do that?

Age 68, have hypertension, never had cancer.

[Sarah]

I read this after posting my message above.

A diagnosis of MDS is based on the presence of (at least one) of the following:

– More than 5 percent of the marrow cells are blast cells.
– Genetic abnormalities seen in the cells.
– Abnormal shape of cells in the blood or bone marrow.

http://www.hopkinsmedicine.org/kimmel_cancer_center/types_cancer/myelodysplastic_syndrome.html

From reading everybody’s posts I might see some hope for her to live well and manage the disease. She has no symptoms which comforts me a little. I really don’t know what to do? I was trying to find a way to falsify the diagnosis. I still hope a second opinion well change things around.

[LeAnn Duke]

Hi Sarah, my name is LeAnn and I have MDS (RARS) refractory anemia with ringed sideroblasts. I am 58 and have never had cancer or any kind of treatments. My cytogenetic so showed abnormal RBCs in size and shape. At this time my blasts are below 5% so my risk right now is low.

I am responding primarily to tell you to encourage your mother in law to definitely get another opinion! I don’t know much about the other types and stages of this disease but I have talked with the wife of a man who is now in his eighties who was diagnosed with MDS over 9 years ago. He underwent chemo for two years and didn’t see much change. They did research on MD Anderson cancer center in Houston TX and found they did bone marrow biopsies on individuals over 70. They thought this might be an option for him. While waiting to find a donor they offered him a clinical trial drug (a chemo drug) to see if he wanted to take part in the study. He opted for that clinical trial and that was a little over 7 years ago. He is doing well and just had back surgery and is recovering from that. His wife said the drug he is still taking has had only a few minor side effects and his hemoglobin stays right at about 12 (which is just about a point low for aa man) and the rest of his counts are normal.

That is a success story! That gives me hope for my future too because it gives me an option other than just a bone marrow transplant. I have a twin sister who can be my donor as long as she stays healthy and something doesn’t happen to her before I get to the stage where I need the transplant.

The MDS foundations have what the call centers of excellence around the United States and I would encourage you to look into one of them that might be close to you all. Don’t give up! It is scary and can be confusing but I don’t believe it has to be a death sentence from the start. From what I understand not all Drs know how to treat MDS and there are Drs that treat only MDS patients.

I wish you luck and pray that your mother in law can find a dr that will do everything available to them to help her.

[Sarah]

LeAnn,

I can’t thank you enough for sharing your experience and we are defiently seeking a specialist.

Your replies to me and others in the board mean much more than you can imagine.

Thank you again.

I wish you and your sister all the best.

[LeAnn Duke]

Thank you Sarah! I hope you and your mother in law get some good info at the specialist. Keep us up to date on what you learn!

[Author]

Posts