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-   -   18 Year Old AA/possible MDS Patient (http://forums.marrowforums.org/showthread.php?t=5261)

Ashleigh K. Sat Jan 9, 2016 12:05 PM

18 Year Old AA/possible MDS Patient
 
Hi all!
I'm new here, but i've looked on this website a few times and decided to finally join.
My name is Ashleigh and I am 18 years old and from the UK. I am currently relapsing with Aplastic Anaemia with a possible chance of MDS too.

Currently back on Cyclosporin and the doctors are considering a BMT.
It's nice to meet you all!

Neil Cuadra Sat Jan 9, 2016 04:24 PM

Hi Ashleigh. I hope you find useful information here.

May I ask you some questions? When did you first have aplastic anaemia? How did they treat it then? What makes you or your doctors suspect it could be MDS?

NLJabbari Sun Jan 10, 2016 04:04 AM

Hello Ashleigh and welcome to Marrow Forums!

Ashleigh K. Sun Jan 10, 2016 06:41 AM

Quote:

Originally Posted by Neil Cuadra (Post 39841)
Hi Ashleigh. I hope you find useful information here.

May I ask you some questions? When did you first have aplastic anaemia? How did they treat it then? What makes you or your doctors suspect it could be MDS?

Hi! I was first diagnosed with Aplastic anaemia in the January of 2009 and i was treated with horse ATG and Ciclosporin uvu

The doctors think I might have MDS because in a recent bone marrow biopsy my doctor said there was a clump of abnormal cells and that MDS is the likely cause. They're still looking for chromosone changes though

Neil Cuadra Mon Jan 11, 2016 12:21 AM

Quote:

Originally Posted by Ashleigh K. (Post 39844)
Hi! I was first diagnosed with Aplastic anaemia in the January of 2009 and i was treated with horse ATG and Ciclosporin uvu

The doctors think I might have MDS because in a recent bone marrow biopsy my doctor said there was a clump of abnormal cells and that MDS is the likely cause. They're still looking for chromosone changes though

Ashleigh,

You may need to undergo further tests, perhaps another bone marrow biopsy, to get a more definitive diagnosis. While a transplant can cure either aplastic anaemia or MDS, and your age may make you a great transplant candidate if you have a well-matched donor, other treatment choices are more specific to the diagnosis. If it's aplastic anaemia, then another ATG treatment is a possibility. If it's low-risk MDS, they may want to "wait and watch".

You might want to ask for a copy of your bone marrow biopsy lab report, even though it's written in doctor-to-doctor terminology, because it will have clues to what they actually found. Then you can ask your doctor more pointed questions, such as what "abnormal" refers to.

Is your family helping you? You want everyone you can get on your support team.

Ashleigh K. Mon Jan 11, 2016 12:12 PM

Quote:

Originally Posted by Neil Cuadra (Post 39855)
Ashleigh,

You may need to undergo further tests, perhaps another bone marrow biopsy, to get a more definitive diagnosis. While a transplant can cure either aplastic anaemia or MDS, and your age may make you a great transplant candidate if you have a well-matched donor, other treatment choices are more specific to the diagnosis. If it's aplastic anaemia, then another ATG treatment is a possibility. If it's low-risk MDS, they may want to "wait and watch".

You might want to ask for a copy of your bone marrow biopsy lab report, even though it's written in doctor-to-doctor terminology, because it will have clues to what they actually found. Then you can ask your doctor more pointed questions, such as what "abnormal" refers to.

Is your family helping you? You want everyone you can get on your support team.

Yeah at the moment its kind of "watching and waiting"
however, I know that the doctors want to push for a transplant because I am young, even though they can only find a 9/10 match for the donor. I will most likely discuss the MDS possibility tomorrow when I see him, as they may have found something.

GoodDay5150 Tue Jan 12, 2016 12:38 PM

Hi Ashleigh. I had a BMT 4 yrs ago for PNH. I had symptoms off and on for a long time before that as well, so I can understand how it feels to have AA. If your condition worsens, your dr's will prob advise a BMT because you are so young and your body can recover more quickly compared to someone older. We all welcome you and are more than happy to answer questions.

Mario


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