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  #1  
Old Sat Jan 9, 2016, 11:05 AM
Ashleigh K. Ashleigh K. is offline
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Join Date: Jan 2016
Location: Birmingham UK
Posts: 21
Red face 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!
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  #2  
Old Sat Jan 9, 2016, 03:24 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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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?
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  #3  
Old Sun Jan 10, 2016, 03:04 AM
NLJabbari NLJabbari is offline
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Location: San Jose, California
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Smile

Hello Ashleigh and welcome to Marrow Forums!
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #4  
Old Sun Jan 10, 2016, 05:41 AM
Ashleigh K. Ashleigh K. is offline
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Join Date: Jan 2016
Location: Birmingham UK
Posts: 21
Quote:
Originally Posted by Neil Cuadra View Post
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
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  #5  
Old Sun Jan 10, 2016, 11:21 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Ashleigh K. View Post
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.
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  #6  
Old Mon Jan 11, 2016, 11:12 AM
Ashleigh K. Ashleigh K. is offline
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Join Date: Jan 2016
Location: Birmingham UK
Posts: 21
Quote:
Originally Posted by Neil Cuadra View Post
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.
__________________
Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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  #7  
Old Tue Jan 12, 2016, 11:38 AM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 122
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
__________________
MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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