About my mother

[fotis]

Hi all, my name is fotis and i am from greece, 28 years old. This is about my mother, Sofia, 50 years old. She was diagnosed with MDS this week and i am searching on the subject. The doctor didnt quiet cleared which kind of MDS it was, but from what she said none from the well known ones. She said all 3 blood lines were affected with dysplasia (red,white,..), but there are NO blasts (didnt find anything on the web on this). She said, she will have a council with other doctors, to decide if its best to go for the bone marrow transplant or not, but she also said she may have a free survival without doing nothing (lies for psychological support??).

Any info would be more then welcome…

By the way, glad to meet to you all, even under these circumstances.

*Sorry for my english

[willie]

fotis You should read all of the correspondence at this web site. They cover nearly all of the topics. Did they check for blasts in her blood tests or in a bone marrow test? Willie

[patti]

Hi Fotis,

It will help you when you get more information from your mom’s doctor. If all three blood lines are effected I would be surprised if they say she can go without treatment. Maybe a “watch and wait” scenario, but eventually she would probably need treatment. Not having excess blasts is a good thing. Blasts are immature cells that eventually differentiate into the three cell lines. But too many immature cells is bad thing. I believe the normal amount a healthy person has is less then 5%.

Hang in there. This is a difficult time. I would recommend you read, read, read all that you can right now. It will help you. You can do a search of this forum by clicking the search button in the top right corner.

patti

[bill4872]

Fotis-

Its a very difficult disease to understand and come to terms with.

I suggest you ask the patient liaison at this MDS Foundation to send you their information packet. In it is a really excellent little book called “Understanding Myelodylastic Syndromes: A Patient Handbook”. It explains everything in clear simple language.

And, as already suggested, read everything you can get a hold of. This forum is great for asking questions and seeing what other peeople are doing.

Bill

[fotis]

Thank you all for your answers, its really supportive.

Mom has MDS-RCMD (refactory cytopenia with multilineage dysplasia). I was reading for hours on the web and i pretty much understand most of the terms and have a better view of the situation now.

I wish the best for everyone. I will check the forum as often as i can.

[Author]

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