New member & caregiver

[BAE]

I'm new to all this & don't know what to think. My husband was just diagnosed with MDS in the last two or three months. They started him on Vidaza immediately. He had his first treatment in the hospital in December, his second in January & just finished his third series on Friday this week. They took two marrow biopsys but couldn't seem to get enough aspirant so the oncologist could not decide if it was MDS or AML. We finally visited with a Transplant specialist who said it's definitely MDS.

Right now my husband looks good (so they keep saying) & has not had bone pain or any fevers. Those seem to be big points. He has had at least 2 full transfusions each month plus extra platelets in between. He bruises very easily is cannot exert himself at all.

I don't know what to expect next. I do know a lady who had about 8 months of Vidaza & it put her into remission - although she gets weekly shots of something called nupogen (sp?) He has low blast counts but I'm only now learning what that is - I think. This is all so confusing.

We are still waiting to hear if his sister will be a match for him but they don't seem in a rush to learn about it.

Does anyone have any advice or knowledge to impart?

Thanks -

Beth E.

[Neil Cuadra]

Beth,

An MDS diagnosis is always unwelcome news but there are a number of positives in your situation. Your husband has a potential match, he's avoided fevers, has no bone pain, and is said not to have AML. If he's responding to Vidaza too then I'd say you have reasons for optimism. Medical research into MDS treatments and cures marches forward every day and you're there supporting him and gathering more information to help him. Those are pluses too.

Nobody can tell you what the future holds. It's true that some patients succumb to MDS. But drugs now let some patients keep MDS at bay for many years. We don't even know the upper limit -- how long MDS can keep working -- since it's been approved for MDS treatment for only about a decade. And cures are possible too. My wife was cured of MDS by a bone marrow transplant in the 1990s, and transplants are safer now than they were then.

Neupogen (filgrastim) is used to treat neutropenia, meaning that it's used to boost the white count. Blasts are immature white blood cells. Normally they are less than 5% of bone marrow cells. If they are over 5% then you want them as low as possible; it's one of the ways they rate the severity of MDS.

Perhaps you could tell us more about your husband's condition, e.g., what his blood count levels have been (presumably low if he needs transfusions and tires and bruises easily), his age group, his overall health, his MDS subtype (something to find out if you don't already know), and the questions you have for us.