London Patient Forum 28/09/12

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murrayfs
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London Patient Forum 28/09/12

Post by murrayfs » 30 Sep 2012 16:33

I just wanted to say that I thought the Patient Forum in London this Friday was excellent. It was great to see such a good turnout of people. I thought Dr Austin Kulasekararaj from Kings College was particularly good. My husband had never been to a patient forum before and he found it particularly informative. It was great that so many patients and relatives/friends were able to share their personal experiences and meet people to talk to.

I'm only 46 myself and was diagnosed with MDS 5q- back in 2000 when I was only in my 30's. I've been to two other patient forum's and this was the first time really where there have been other younger people there too. It is good to know that other younger people are probably being diagnosed better and will have some of the same thoughts and concerns that I did initially, but now hopefully have a greater source of information through our patient group and the forums.

I'd be happy to chat to anyone about their MDS experiences, and particularly if you have 5q- or are a "younger" patient.

regards
Fiona
Fiona - Female, age 52, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
david j
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Re: London Patient Forum 28/09/12

Post by david j » 30 Sep 2012 21:35

Hi Fiona

I was at the London Forum on Friday and also thought it was excellent,very informative and am very glad that i went.I too am a "younger" patient at 47 and have MDS RCMD.I was diagnosed in March this year (My story is under the category "My Experiences" topic-"Just been diagnosed") after having low platelets and white cells since 1999/2000.They were picked up on a routine blood test but it took 13 YEARS to diagnose MDS.So,i too may have had it since my mid 30's but it never showed up in my bone marrow.

Shame we never got chance to chat and share our experiences on Friday.I will definitely attend any future London forums as they are very helpful.

Take Care

David Jacobs
David,Age 54,MDS RCMD 2% blasts,IPSS Score 2,normal chromosomes,normal cytogenics.Diagnosed March 2012,normal Red Cells, low White Cells & Platelets,Slightly Enlarged Spleen.No current treatment,active 4-monthly monitoring.Brighton,E.Sussex.
chris
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Re: London Patient Forum 28/09/12

Post by chris » 01 Oct 2012 14:17

Hi Fiona and David J

Good to see both of you at the Forum on Friday. Yes, I too was struck as I often am at these meetings - (and I have now been to 6 of them) - that although the median age for diagnosis is currently 72+, there do seem to be an awful lot of younger people at the meetings who are affected by MDS. I wonder if it is simply that doctors are not looking for MDS in younger patients who have clearly got blood count issues and it is not until obvious and bothersome symptoms occur that a proper investigation and diagnosis is made. After all , it is only a bone marrow biopsy which can really confirm an MDS diagnosis. I reckon I had low white cell counts for at least 6 years before mine kicked off as I kept having recurrent cellulitis on my legs but always managed it myself and never went to the doctors - not that they would necessarily have put 2 + 2 together and got the blood counts done - more likely they would just have kept prescribing antibiotics!!!

Fiona/David - maybe you could put up a separate topic unger MDS diagnosis for MDS patients under 50 as there may be an even greater need for support and information on other issues such as employment etc?

Take care

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
murrayfs
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Re: London Patient Forum 28/09/12

Post by murrayfs » 01 Oct 2012 15:25

Hi David, Chris,

David - sorry I missed you on Friday - I usually hone out younger people that I spot!!

Chris - I think you're right about younger patients not being diagnosed. At the time I was diagnosed I was still playing basketball for England so was physically very fit, so my inablity to fight off infection and shortness of breath due to anaemia flagged up right away. Had I been a "normal" person as such without the same intense exercise regime I suspect it would have been some years later until I was diagnosed. Davids example also highlights the fact that GP's don't necessarily consider this disease in young people - and that's also dependant on how much they know about MDS anyway.

I will try and post something about younger patients, because I am seeing more of them at forums.

regards
Fiona
Fiona - Female, age 52, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
punda milia
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Re: London Patient Forum 28/09/12

Post by punda milia » 01 Oct 2012 16:36

Hi all

My husband and I both thoroughly enjoyed the London Patient Forum on Friday. We found it very reassuring as I have only just been diagnosed formally with mds. I was originally treated in 2002 for Low Grade Non Hodgkins Lymphoma with chlorambucil and steroids. NHL is never completely cured but it has been in remission since early 2003. I am now presenting with macrocytic anaemia, low white blood counts and a slightly low platelet count. I am being treated at both Lewisham Hospital and Kings College Hospital. I would be interested to know of anyone else who has developed mds following treatment for Non Hodgkins Lymphoma.

Diana Lockyer
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
clareybabs
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Re: London Patient Forum 28/09/12

Post by clareybabs » 18 Apr 2013 16:55

HI ALL, SHAME I COULDN'T MAKE THE FORUM - BUT I WAS IN HOSPITAL GETTING PREPARED FOR MY CONDITIONING THERAPY, IF YOU LOOK UNDER SAY HELLO AND GENERAL MESSAGES, - NEWLY DIAGNOSED - YOU CAN READ MY STORY. CONSIDERING I WAS TOLD BY MY CONSULTANT THAT IT WAS A RARE CONDITION IN A YOUNG PERSON, MAINLY AFFECTED OLDER PEOPLE, SINCE BEING ON THIS SITE I HAVE ACTUALLY COME ACROSS LOADS OF YOUNG PEOPLE WITH IT
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
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