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Old Sat Aug 3, 2019, 02:24 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
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Hi cologne74,

Here are some thoughts on your questions. I'm not in the medical field, so take them with a grain of salt!

Quote:
Originally Posted by cologne74 View Post
1. How likely is it that the MAA stays stable vs. a steadily declines/gets worse?
Sometimes the cause of MAA can be a virus, medication, or chemical. One my hematologists said that he will get 10+ patients a month referred to him for possible AA evaluation because of one of these causes.

If the cause of your suppressed bone marrow and counts is related to this, sometimes the marrow can heal itself when the offending agent is removed. It can take months for the healing to happen though. In case this relates to you, take a hard look at your diet and every medication that you are taking and try to eliminate any potential toxin. This includes seemingly benign things like tea, alcohol, and over-the-counter medications.

Assuming that your counts have been low or are lowering for 4+ months, then something else may be going. The question is whether it is immune mediated or genetic.

So MAA can get better, or stay stable, or get worse - it all depends on the originating cause, how quickly that cause is removed (if possible) and how strong enough your marrow is to recover.


Quote:
Originally Posted by cologne74 View Post
Do you know of any studies analyzing MAA development over time and what are the results? I somehow have the feeling that blood values will worsen over time and how our AA is classified only depends on when our AA is discovered so that untreated we will all end in the vSAA cluster , but I have also seen some reports here about stable situations. Are they the rare exceptions ?
Some people are lucky and have symptoms that mimic MAA (like a bad virus or vitamin/mineral deficiency). Since AA is rare, yet my local hematologist sees so many potential AA patients a month, I would think that this is the most typical scenario. In other words, it may look like you are developing AA but you are not. This is one of the reasons for watch-and-wait.

The classification of AA depends on your bone marrow cellularity and counts. You can't have an AA diagnosis without a BMB.

MAA may not progress if the marrow is able to overcome the immune attack and heal.


Quote:
Originally Posted by cologne74 View Post
2. Are there any studies analyzing whether it is better to "watch" and treat later vs. fighting the roots and starting treatment early? What is the potential impact of early vs late treatment with regards to remission and relapse?
I do remember reading a paper years ago that MAA patients can have a worse outcome then SAA patients if their disease progresses because success can be related to how quickly an immune attack is stopped. I was worried about this case for myself, as I was in watch-and-wait mode when first diagnosed because I didn't fit the complete diagnosis of SAA despite being transfusion dependent. I think that if you are categorized as MAA but become transfusion dependent, then things are obviously progressing in the wrong direction and treatment should be started quickly to prevent further damage to stem cells. This is just my opinion based on my own experience.

Since none of the treatments for AA are benign and people can die from them, doctors don't want to initiate them early ("first do no harm"). Besides, with IST, having a partial response is considered a great thing, even though your counts may be shockingly low to the normal person. So, if you are already in a "stable" state, even with below normal counts, it doesn't seem like you would want to rush treatment and risk death or other long term consequences. You can live a great life despite having below normal counts, assuming things are stable.

Quote:
Originally Posted by cologne74 View Post
3. Is permanent remission after IST at all possible and or is it always only temporarily (since one is not healed) but it differs how long it lasts for someone? Do you know of people with remission >20 years?

Any other insights about moderate AA are highly appreciated. Thank you once again for your help.
I have always heard that IST is not a cure. That being said, I know of people that have been stable for 15 years. I have watched presentations in the past where some of the leading hematologists have said some of their patients are stable for 25 years after IST. If your AA is because of an immune attack, and IST stops that immune attack, and your marrow is strong enough to heal, you could very well be a long term surviver.

Wishing you the best of luck!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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