just to say hi,and get involved?

Please post here your experiences of MDS as a patient, carer, family or friend

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Joined: 03 Oct 2011 19:59

just to say hi,and get involved?

Post by stephen.gillard » 06 Oct 2011 17:12

was told end june this year that i had mds,like most if us no idea what it is /was etc,went in to denial,but had the bottle to go to the london forum,well best thing iv'e ever done(well not quiet the best thing iv'e done),was not to sure about meeting other people with the same thing,but so surprised at the range of syptoms this thing;s got,and Dr Vyas,well he was just spot on,my wife and myself found his talk really use fall,this has given me the courage to go to my locall cancer club.
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Joined: 01 Nov 2010 17:54

Re: just to say hi,and get involved?

Post by janetstanford » 06 Oct 2011 18:50

Hi Steve and welcome :)
courage i am sure we all have bucket loads just finding it some days is an issue :? good to hear you found yours some what quicker than me took a couple of years before i joined the forum but i have found posting and hearing back from other members do help even if you know nothing of what they are talking about i find even good wishes help
please feel free to join in any of our posts a comment, question, good wishes or a :) you are welcome to chat

look forward to hearing from you again Janet :)
Posts: 612
Joined: 01 Dec 2009 21:52
Location: Essex

Re: just to say hi,and get involved?

Post by chris » 07 Oct 2011 17:41

Hi Stephen

We talked briefly at the Forum in London and so glad you found it helpful. Yes, Dr Vyas was great - very thoughtful about his answers and he gave a very comprehensive talk about MDS and treatments.

Have you also checked on this site to see if there are any regional MDS groups meeting that you could join as well as a general cancer club may not be so specific with some of the issues that MDS patients have. As you say, the symptoms are many and varied!!! Sophie may be able to put you in touch with others in your area, too.

Hope your MDS is not too bothersome for you at present?

Best wishes

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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