My father has MDS (?)

[Vasilios2]

Hi, I am new here but i have been reading your forum for the past 3-4 months. My father lives in Greece. A Healthy overall active 78 year old he developed some weakness 1 year ago. Blood results showed low hmglobine at 9 and rbc at 4. After that his symptoms went away and other lines started going down. First bone marrow in Athens was incloclusive and the doc said “no evidence of MDS or leukemia”. Probably viral or toxic exposure (he did use Thion a harsh pesticide and a week later the symtoms started)
he was here in the States and another bone marrow showed some dysplastic changes consistant to MDS.
His platelets are hovering at 50K his hgl is now 10 his rbc count is normal at 5K but his WBC is steady between 2200 and 2800. His chromosome analysis showed no abnormalities. Waiting for the flurocytometry. He is back to Greece and he feels fine. The good news is that there are 3 centers of excelence in Greece that he can go if he needs tx. Currently he receives no tx and takes B complex vit and C.
Sorry for the lenght of the e-mail but I would like some feedback and opinions
Thank you and God bless.

[Suzanne]

Welcome, Hope your news from the BMB here is good. Nice to have those centers of excellence close in case he does need them. Many have a long way to travel to get to one. Fingers Crossed

[Terri]

I hope Your Dad is doing well, His counts are a lot like My Bobs, No Abnormal Chromosomes, RBC normal, HGB in the 10s. Plts 50-60 but the wbcs are in the norm now with the Vidaza treatments.
I will add your dad to my prayers

[Vasilios2]

Thank you for your support. Terri any more vitamins that can help?

[Terri]

WE have a Nutritionist who has suggested A lot of Vitamins and Supplements especially for the Immune System. If you look at the Home page of the MDS foundation on the right there is a Link that says So you have MDS it was a nice article that I think Neil mentioned, ANyhow in there the author talks about excercise, vitamins etc.
I would definately suggest to all that a good diet (Nutritionist ) and supplements and vitamins do help. Naturally after finding an experienced Dr with MDS. We are lucky with our dr and I am very happy with the Nutritionist we found he is located in NJ we did all via phone, mail and email. I can give you his number if interested.

[sarah]

Will keep your dad in our thoughts and prayers.

[Arkadi]

Hi Vassili, I hope you have strength and the patience needed to back up your old man.

My father also has MDS and is on Thalidomide, his rbc levels are low but steadily increasing. His version is the RARS…

Do you know what version of this syndrome plagues your father???

[Vasilios2]

Hi, after the bone marrow test they said refractory cytopenia with multilineage dysplasia. No mention of excess blasts

[Suzanne]

Vasilios, I believe that is Refractory Anemia , one of the easier forms of MDS to treat and live with. Hope that turns out to be true for you Dad.

[Vasilios2]

I hope so. I am waiting on the florocytometry. What will this test show? what are they looking for? anyone who knows?

[Suzanne]

I believe this is the part of the test that would show any chromosome abnormalities.

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