MDS/MPD

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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Jayne
Posts: 194
Joined: 16 May 2011 11:33
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MDS/MPD

Post by Jayne » 13 Sep 2011 17:06

Hi
I'm confused. On the home page there is a link to an event in London for MPD? How is this different to MDS and how come it comes under the MDS patient support group? It isn't that you aren't welcome I just wondered. At first I didn't realise it said MPD and I was thinking of attending as I havent attended any meetings and I thought it might be nice to hopefully meet those I have been talking too (Chris, Janet, June, Sarah, Darren etc). Can someone please explain the difference/similarities.

Thank you!
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: MDS/MPD

Post by sophie » 14 Sep 2011 10:51

Hello Jayne,

we posted the MPD event on our home page as CMML which is a form of MDS is also classed as an Myeloproliferative condition.
Some of our members have CMML.
MPD's are condition where the bone marrow produces too many white blood cells.

If you are unsure about the sub-type of MDS you have - please do make sure you speak to your clinical nurse specialist or haematologist.
It is good you asked the question - but it is very important that questions of a clinical nature are always discussed with trained clinical staff.
The forum is only there for support and exchange.
Sorry to stress this again - but as this forum is not moderated regularly, we have to remind all readers regularly of this very important point.
Thanks
Sophie
Patient Liaison
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: MDS/MPD

Post by Jayne » 14 Sep 2011 11:38

Thank you Sophie.

I do know what sub category I have (RCMD) but when something came up on the forum that I wasnt really aware of, ie MPD I asked the question. As MPD isn't relevant to me I'm not sure my Professor/clinical staff would discuss with me.

As you say the forum is here to support each other, in order to do that we often ask each other which form of MDS we have and what that means to us and how it affects us. I am not sure why my question would have to be moderated.

I really only wanted to understand whether the meeting being held at the end of September was relevant to me. I dont think it is.

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
Posts: 630
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: MDS/MPD

Post by chris » 20 Sep 2011 22:32

Hi Jayne

Although the MPD event in November isn't relevant to you, I think the London MDS Patient Forum on 30th September would most certainly be and I am going if you fancied a trek down to the Big City!!! I'm sure you would benefit from the session where patients share their experiences and from the information session in the afternoon and you get to ask questions too!!

As Sophie says, Myeloproliferative diseases are when the bone marrow makes too many cells (red/white/platelets) whereas myelodysplastic diseases produce too few and funny-shaped ones at that! CMML is called an MDS/MPD disease because it can be one or the other type and I have the myelodysplastic type - or that is my closest diagnosis at any rate!! So I wouldn't be going to the MPD day either because I don't fit that group but other people with the myeloproliferative type of CMML would find it helpful!

Hope that helps and it would be great to meet face-to-face - though not necessarily for you seeing mine!!! Ha ha!

All the best

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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