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AA Aplastic anemia

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Old Mon Oct 29, 2012, 05:06 PM
Join Date: Oct 2012
Location: Cayman Islands
Posts: 56
Questions and Terrified

I find the internet such a wealth of information but being newly diagnosed with AA it also absolutely terrifies me as it is hard not to focus on the negative aspects of the disease especially when I read that the drugs are not a cure and that life expectancy may be only be 18 to 24 months. As a mum to two little girls this just makes me want to scream.

It also seems surreal that I can have such a serious disease when other then feeling tired and like I don't really feel like doing any exercise I feel totally fine.

18 months ago (just before my second beautiful girl was born) my bloods looked totally normal .... so here I am wondering whether my AA has just come on suddenly and if AA comes on suddenly is it more likely to develop into serve AA and is it more likely to cure itself??

I guess what I really want to know is are there people out there who have won the battle and do not need to take drugs anymore?

The other question I have is how long have people needed to be on the drugs for?

The drugs terrify me as well as it seems you may beat AA but then from what I have read the drugs associated with AA seem to increase your risk of leukaemia.

As an only child and nearly 36 it would appear from what I have read that a BMT is not a great option for me.

My WBC is anywhere between 4.0 and 2.52, my RBC between 3.10 and 2.32, my HGB between 11.3 and 8.5 and my platelets seem to be the ones that keep falling as of 3 days ago they were 23. My ANC has dropped to 0.53 but the very next day been back at 1. My neut% is low and my lym% high at around 82. I started cyclosporine 9 days ago.
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Old Mon Oct 29, 2012, 08:25 PM
Karenish Karenish is offline
Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
Firstly you are not alone, there are thousands of us, who have been through and come out the other end. It is a life threatening disease but it is not classed as a terminal disease. Most of the articles you find on the internet are out of date, and way back in the 70s then you probably did only have about 3 years to live, but this is 2012 and new treatments are coming online regularly. My guess is that they will monitor you and if need be you will be given ATG which is horse serum. There are lots of postings of what to expect, but remember everyone is different. For my experience it has been relatively ok, I wouldn't say its been easy as that would be flippant, but doable! After 10 months my counts began to climb and they continue to climb slowly but steadily. There are many on here who have gone into long term remission, one person 27 years and counting! So don't dwell too much on the internet. If you have facebook, look for Aplastic Anaemia your fight is my fight. You will read lots of positive stories, some don't have happy endings but this is life. Your neighbour may be the picture of health, but go out and be involved in a car accident, does it stop them going out? Be informed but dont overload - give yourself a day to be miserable and then decide that the next few days are going to be good days.
Take each day as it comes and embrace this new journey, we will all be here holding your hand towards recovery. xx
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Old Mon Oct 29, 2012, 09:09 PM
Join Date: Oct 2012
Location: Cayman Islands
Posts: 56
Thank you for your reply Karenish.
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Old Mon Oct 29, 2012, 11:36 PM
ssdavi71416 ssdavi71416 is offline
Join Date: Mar 2012
Location: Atlanta Georgia
Posts: 105

There is a webinar Thursday AA101 at the AAMDS.org site. If you go to the website you can sign up.

Scott Davidson
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Old Mon Oct 29, 2012, 11:58 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 721
As Scott pointed out, you should really try and attend the webinar on November 1st to get the lastest information on AA and have the oppurtunity to ask questions of an AA expert. Here is the information about the webinar:

"This session will use a combination of lecture and case studies to present the most current thinking on the treatment of aplastic anemia. It will begin with an overview of current thinking about the disease mechanism. Next, Dr. Pulsipher will review treatment options currently being used for patients with aplastic anemia and the factors that influence specific treatment decisions.

Treatment options discussed will include watch and wait, supportive care, ATG, bone marrow transplantation, and clinical trials. A brief discussion of horse vs. rabbit ATG will also be included. Plenty of time for questions will be provided."

Here is the link to register:

If you can't make this webinar "live", there are plenty of other archived webinars that will have more accurate information on your disease and prognosis. They will put you in better spirits!
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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