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[Pattyannke]

Just checking in as a new member. My husband was diagnosed in September and his diagnosis is Refractory Cytopenia with trilineage dysplasia compounded by Chromosone three inversion. He began his fourth round of Vidaza today. When this cycle is complete they will repeat the Bone marrow biopsy to see where we are. No match on the registry, his siblings were tested and his brother is a haploidentical match. Our son is being tested now since his brother was only 50%. Just trying to learn as much as I can about this disease that has turned our world upside down.

[bailie]

Pattyannke, welcome. You will find a terrific amount of information and help on this forum. Ask as many questions as you want. Many of us have been in similar situations and the archives are filled with information. I have had a total of seventeen cycles of Vidaza, a stem cell transplant (SCT) for MDS and a relapse at Day +210 to AML +Philadelphia chromosome.

[Cheryl C]

Hi Pattyanke. As Bailie has said, you will find heaps of info by searching this forum. You are wise to gain as much knowledge as you can - it makes all the difference to how you feel about the disease (I assume MDS). Does your husband have any blasts?

[Pattyannke]

Thanks Cheryl and bailie -- the search for up to date info is really difficult. I am just trying to wrap my head around this whole thing without feeling like I am drowning. We met with the Doctor yesterday and it was a really disappointing visit. Usually the numbers trend upwards right before the round of Vidaza begins. That did not happen this time. The WBC was 4.0, RBC 3.31, hgb 8.4 and platelets 50. During the Vidaza, the numbers plummet so Dr. Said to expect lots of blood products in the next few weeks. He fears the Vidaza is not working and the disease may be progressing at a quick rate. Biopsy scheduled for week if 18th. Then we will see what the next course of action will be.
In the initial BMB his blast count was 5%. We were warned at that time that inversion Chromosone 3 has a poor prognosis and he MDS could change to AML in a short period of time. Husband is 64 and was in good health but is having aFib and has been on a parade of antibiotics for skin rashes and a severe cough.

[Cheryl C]

Hi Pattyanke

Have you accessed the AA&MDS International Foundation website on http://www.aamds.org/about/MDS/types

There's also useful information and a lot more links here: http://www.uptodate.com/contents/mye...ond-the-basics