I need to understand AA

[paulaespada]

Hello!


For 4 months we were told my husband has MDS.
After 4 hospitals he was submited today to 4th mielogram and 2nd bone biopsy.
This doctor things my husband has more probabilities of having AA than MDS.
Although I've learned a lot about MDS I know nothing or almost nothind about AA.

Doctor told if he is right my husband will be hospitalized, no less than 4 weeks to have immunosupression therapy.

I wonder: what's the difference between MDS and AA?
To have imunossupressors in hospital does the patient be in total isolation as in bone marrow transplant?

Doctor told it's easier to treat AA than MDS. Is this right?

As you can see I need to know all you can tell me.

More, can you please give me some guidance about the questions I will put doctor when we go there to have the outcomes of today tests?

I have no words to say how grateful I am for you all in this forum. I really mean it. I think I might had gone already crazy if it wasn't your help.

God bless you all!

[Marlene]

Paula,

Ususally, AA is usually not treated unless it's classified as severe (SAA). AA can effect all or just one blood line but most see all three lines effected. Most feel it's an autoimmune disease where your immune system is destroying the blood stem cells in the bone marrow. AA is usually diaganosed by ruling out leukemia, MDS and other anemias. They should also check for PNH and gentically caused anemias. A bone marrow biopsy is a must to check for abnormal cells. Basically, the bone marrow cells are healthy in AA (that's a good thing) and if you can arrest the destruction through immunosuppressant therapy, then the bone marrow/blood will rebuild. Sounds simple but unfortunately, it's still a difficult disease.

The standard ATG treatment is done over 4-5 days. They use steroids to manage the side effects and support you with various meds and transfuions until you recover. Recovery varies from person to person. Do not expect to see a response right away. Counts may drop initially. Many need a second treatment. Most doc look for response to happen in 3 -6 months. But some have taken as long as a year.

What are your husbands counts now and did they tell you what his bone marrow cellularity is?

As you can see by my signature, my husband did High Dose Cytoxan for his AA. Johns Hopkins in Baltimore, MD is doing a trial with it. ATG with Cyclosporin, or a bone marrow transplant, or High Dose Cytoxan are the three treatments out there. The National Institue of Health has some other trials. They are all focused on suppressing the immune system. So some form of immunosupressant therapy is what they do.

[paulaespada]

Originally Posted by Marlene

Paula,

Ususally, AA is usually not treated unless it's classified as severe (SAA). AA can effect all or just one blood line but most see all three lines effected. Most feel it's an autoimmune disease where your immune system is destroying the blood stem cells in the bone marrow. AA is usually diaganosed by ruling out leukemia, MDS and other anemias. They should also check for PNH and gentically caused anemias. A bone marrow biopsy is a must to check for abnormal cells. Basically, the bone marrow cells are healthy in AA (that's a good thing) and if you can arrest the destruction through immunosuppressant therapy, then the bone marrow/blood will rebuild. Sounds simple but unfortunately, it's still a difficult disease.

The standard ATG treatment is done over 4-5 days. They use steroids to manage the side effects and support you with various meds and transfuions until you recover. Recovery varies from person to person. Do not expect to see a response right away. Counts may drop initially. Many need a second treatment. Most doc look for response to happen in 3 -6 months. But some have taken as long as a year.

What are your husbands counts now and did they tell you what his bone marrow cellularity is?

As you can see by my signature, my husband did High Dose Cytoxan for his AA. Johns Hopkins in Baltimore, MD is doing a trial with it. ATG with Cyclosporin, or a bone marrow transplant, or High Dose Cytoxan are the three treatments out there. The National Institue of Health has some other trials. They are all focused on suppressing the immune system. So some form of immunosupressant therapy is what they do.

Marlene,
Your answer is helpful to me.

My husband bone marrow cellularity in February was hippocellular but some parts showed hippercellularity.

Since then Platelets, RBC and Hb has been dropping. WBC and neutrophils are ore stable but decreasing as well.

Last blood tests (at left) compared with first in January (right) were:

Platelets - 49 79
WBC 2.9 3.3
Neutrophils 33% 35%
Hb 11.1 9.1

Now he had more blood tests and we hope we can have a definitive diagnosis on June 12th.

Thank you again for your help - and all those who can say their opinion and testify.