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  #1  
Old Mon Sep 12, 2011, 10:24 PM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Thumbs up Melbourne Patient Conference

Hi all! Just wanted to pop in to say that the Leukaemia Foundation's Patient Conference in Melbourne was fantastic. Even though most of the MDS patients I met were much older than I, it was good to share stories. I also had a free consultation with a specialist and research Doctor in the field.

After he had finished his talk and discussion on clinical trials of drugs etc, I got to ask him some of my own personal questions. And in my situation of secondary MDS and age 35, bonemarrow transplant would be his recommended treatment also.

I guess it was great to get that second opinion, and free of charge! But it was also a little unnerving to know that our disease is still quite rare. With only about 10 people in the room with the condition. and the rest of the hundreds in other rooms with different types of blood cancers etc.

It was really good to be there, and I dont mind being rare! The Doctors at the Royal Melbourne Hospital take really good care of me, and also as a country patient.

Thanks heaps Leukaemia Foundation of Victoria! It was a fabulous day. Exhaustive information, but so worth it.

Jules xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Tue Sep 13, 2011, 12:13 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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Jules,

The doctors who are willing to speak to and help patients at conferences deserve a lot of thanks and appreciation. And as a patient it's nice to find some "peers", isn't it?

Are you going to keep in touch with other MDS patients you met?
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Old Tue Sep 13, 2011, 10:53 PM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Hi Neil - well I didn't get anyone's details but a bus load of us from the country had some good chats on the journey. Our support group meets once a month and I know most of them, and often have a cuppa with a friend who had a BMT 7 years ago. She is such a wealth of information too.

She has turned 50 this year, so still quite young really. And who knows I may be in my 40s before I have BMT. Hope I'm not hanging in no-mans land for that long! Anyway, my life is ok for now. Just have to keep those infections away.

Thanks for caring Neil. Julie xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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