AML

Comments, thoughts and issues on any other aspects of MDS - not covered by other folders - PLEASE CHECK before you post in this folder.

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northernone
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AML

Postby northernone » 02 Apr 2013 20:46

I started a topic about my dad being recently diagnosed... Having received more info today they have said he has RAEB but did not say whether it was 1 or 2 and have said he will need a bone marrow transplant probably in the next two years and that his type of MDS will DEFINITLY develop into AMLis this correct information As I am seriously doubtful of the consultants claim that this will definitly happen??
janetstanford
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Re: AML

Postby janetstanford » 03 Apr 2013 12:11

HELLO
A very difficult and stressful time for you and your family and you are bound to question what you are told ,i would suggest you contact Sophie ( on the e-mail she has just posted in the how to use the forum section) or by phone as i am sure she is the best person to talk to as regards this .although we can relate to your situation i do not feel able to comment as i am not a medical professional best to talk to somebody who knows :)
Please keep us informed and take care Janet
chris
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Re: AML

Postby chris » 03 Apr 2013 17:35

Hi Kim

I know you have already spoken to Sophie but now that you have more information, you may want to contact her again?

You will have realised from reading this Forum that some people have certain types of MDS and various factors in their chromosomes which makes it more likely that their disease will progress to AML. It seems to me that you have not got confidence in your father's doctor's assesment of his situation? Or maybe, quite understandably, you are still in shock and unwilling to take on board this difficult suggestion? I think we have all gone through periods of disbelief that this could be happening to us or our loved ones. Whilst MDS can be quite an unpredictable disease, there are nevertheless some indicators which research has found to be predictive of poorer outcomes. There is a tool called the IPSS-R which is an internationally accepted way of helping doctors make these predictions about the likelihood of an individual's MDS progressing to AML - though, as with all tools, it may not be accurate for every single individual. The idea of undergoing aggressive treatment like a stem cell transplant is to prevent the disease developing into AML as, at that stage, it is not very successfully treatable.

If you want to read about it, there is a link on this site and Sophie may be able to help you de-mystify it further.

http://www.mdspatientsupport.org.uk/dr-david-bowen-the-revised-international-prognostic-scoring-system-decoded/

I hope you are soon able to resolve your doubts and be able to place your trust in your Dad's doctors.

best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
northernone
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Re: AML

Postby northernone » 04 Apr 2013 15:21

Thanks for the replies I'm not sure how much more info I can take in there seems to be so much contradictory info that I think the easiest way forward is to go with what his doctors in newcastle are saying? My dad is happy to with them and happy to be treated there maybe I'm just finding it harder as I live far away and have been unable to go to his appointments with him! At the moment his siblings are been tested for
Bone marrow match and the hospital are keeping an eye on him and any signs of change he is going to have a transplant as long as a suitable match is found! Thanks for all the advice so far it helps!
Kim
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: AML

Postby janetstanford » 04 Apr 2013 19:14

Hello
You are quite right so much information so much to think about and it is bound to stress you out and as you say living so far away must make you worry not knowing what the work situation is maybe they may be able to give you a couple of day off for his next visit to clinic where you would be able to ask questions yourself to put your mind at ease ...it must be worrying for you
i am treated at a hospital in the north and for my transfusions and i always book myself into a ward i am used to and comfortable with the nurses esp those who have a silk touch when it comes to needles ( i used to be chicken ) i believe if your dad is comfortable happy and feels safe this will go a long way in his health improving
The Freeman is an excellent hospital and when i have been on the wards i have met several people who were about to have a BMT there and i have not heard one wrong word or negative comment from any of them hope this gives some encouragement
give your dad my best wishes
Janet :)

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