AA and MDS International Foundation

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chris
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AA and MDS International Foundation

Post by chris » 09 Jan 2012 12:13

Hi All

Just received a mailing from the above organisation advertising some new information sources following the American Society of Haematolgists' Annual meeting last month.

There are 2 webinars of interest to MDS patients on 24th and 31st January on new strategies for diagnosing and categorising MDS and emerging treatments. You can sign up for them here:

http://www.aamds.org/

There is also an interesting overview on the latest developments here:

http://www.patientpower.info/player/apl ... 3048D404C1

Hope you find them useful

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Sheldon

Re: AA and MDS International Foundation

Post by Sheldon » 10 Jan 2012 22:37

Thanks Chris
That is of great interest, and look forward to watching the webinars.
I have just been reading articles on the information that ahs come out of the seminar and loged on to let outhers know how to get all the latest info so your posting is most helpfull.
For those of you who have not discovered Google alerts, there is a host of info out ther wich will be sent straigt to your e-mail everytime something new is published on the web. in your search bar type in google alerts and a form will come up. Simply type in the subject you are interested in (Myelodysplastic syndromes) and give them your e-mail. You will imediatetely start to get e-mail on your chosen topic. I get between 5 and 10 a week on MDS ranging on anything from trials, new treatments, reasearch, conferences, books and before my list puts you all to sleep, any outher related topic.
Hope you are all doing well
Sheldon
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: AA and MDS International Foundation

Post by chris » 11 Jan 2012 16:58

Hi Sheldon

What a great tip. I will sign up for this straight away! Also thanks for drawing attention to the info on blood counts (which you posted elsewhere!) - very helpful and soooo interesting that the ranges of normal can differ so much between age, gender and ethnic origin.

Hope you are doing OK? Are you having any treatment at the moment and, more to the point, are you coping with your very busy work etc with any symptoms you might have?

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Sheldon

Re: AA and MDS International Foundation

Post by Sheldon » 11 Jan 2012 21:14

Thanks Chris
Yes work is great at the moment, only doing 4.5 hrs in the evening. I am not having treatment yet, only got my diagnosis in October, and am having my first follow up on Tuesday. At the time of the diagnosis I simply accepted my consultants words of "good news you don't have leukaemiayou have a syndrom called MDS" and went home with the booklet he gave me to discover for myself what he was talking about.
Thanks to all the advice and pointers from all of you on the site I have prepared my list of questions for Tuesdays appointment and am looking forward to knowing a bit more about what is install for me. Just hope my blood counts are strong (my main problem is a low neutrafill count, althoughin the last 2 tests it appears my red blood cells have started to appear abnormall and enlarged).

Anyway, on a more positive note I have begun to study the nursing text books in preperation for going back to university for a nursing degree. Just hpoe my consultant does not tell me that working in a hospital enviroment is simply not going to be possible.

Anyway, keep well
Sheldon
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: AA and MDS International Foundation

Post by chris » 12 Jan 2012 14:13

Hi Sheldon

I wish you well with your appointment next week and glad that you have your list of questions. It is often said that medical people really hate lists but I do strongly feel that those practitioners who do listen and share in the whole process with patients are the best ones! After all, it is our body and our problem so who else is more interested in all the implications?!

You should come away with a firm diagnosis and categorisation of your MDS as well as any plans for treatment or whether you stay on active monitoring. (Let's hope so!). Yes, I think you should ask about the risks of working in a hospital environment if you have low neutrophils and, if there are risks, you probably do need to discuss this afterwards with the Occupational Health team where you work as there may be precautions you should take to minimise the risks - such as not working in wards with infectious patients for example!! At the Cambridge Forum I spoke to a lady who had really low neutrophils and she was working in a nursery school environment where many of the children had coughs and colds and "accidents" which she was expected to deal with! I hope I persuaded her to speak to her employers about how she could make some changes to reduce her risk.

Let us all know how you get on. There always seems to be a lot "invested" in these appointments and you don't want to come away with unanswered questions to brood over until the next one! Once you have a diagnosis, perhaps you could add it into your signature (instructions under another topic- can't remember where!). That helps us all remember the key things about your diagnosis and not have to trawl back through the posts!!!

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Sheldon

Re: AA and MDS International Foundation

Post by Sheldon » 12 Jan 2012 20:48

Thanks again chris, absolutely great advice.
In the weeks after my diagnosis I could not wait for a more specific diagnosis, so I had a word with the consultants secratery and she gave me more details. I am thankfully low risk and mysyndrom is called Refractory Cytopenia with Multilineage Displacement (RCMD). She also gave me a print out of all my blood tests since they began investigating my fatigue, and the good news is that the results have not changed very much. Anyway I have taylored my questions around all that info.

Have a great weekend
Sheldon
Bobby Shaw
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Joined: 04 Jan 2012 06:52
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Re: AA and MDS International Foundation

Post by Bobby Shaw » 19 Aug 2013 09:59

Hi all,

Chris had pointed out this useful website and link to the AAMDS. On Saturday, September 7, AAMDS is hosting a live webcast on MDS. Three sessions are planned--90 minutes on "Current thinking on the Disease, Diagnosis and Treatment"; another 90 mins on "New Directions in MDS: What's on the Horizon?" and a final session on "Managing Bone Marrow Failure Disease with Complementary and Alternative Médicine and Integrative Médicine". The first two sessions are being presented by Dr David Steensma from Harvard. I have listened to some of his previous webinars and find him to be a superb presenter, dealing with complicated issues without heavy jargon.

If anyone is interested, it is easy to sign up for this webcast. First, go to the AAMDS website home page (www.aamds.org). Then click on Explore the Online Learning Center on the left hand side of the page. Then, click on "Learn More and Register for Our Upcoming Live Webcasts". The first session begins at 2pm UK time.

Happy listening and best wishes to all on the forum,
Bobby
Sophie
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Joined: 20 Nov 2008 14:05
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Re: AA and MDS International Foundation

Post by Sophie » 19 Aug 2013 13:38

Dear all,
we highly encourage everyone to listen to the webcasts.
Dr Steensma is a fantastic speaker and always talks in a most straight forward way - as well as being a one of the top MDS specialists world-wide.
Do feel free to post comments and feedback on here after you listened to the webcast.

Thanks
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: AA and MDS International Foundation

Post by chris » 20 Aug 2013 11:58

Hi Bobby

Help! I have searched the site as you suggested but cannot find anything on September 7th or anything coming up by David Steensma for that matter! There is a Patinet Forum in Boston on that day bit again can't find anything which allows me to register?

Can you help?

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Bobby Shaw
Posts: 18
Joined: 04 Jan 2012 06:52
Contact:

Re: AA and MDS International Foundation

Post by Bobby Shaw » 20 Aug 2013 15:53

Hi Chris,

Sorry if my previous note was not clear. Let me try again! On the left hand side of the aamds home page, there is a column headed "Online Learning Center". The last box of that column is called: "Explore the Online Learning Center", so click on that box. Do NOT use the box further up the column called "Sign up for Upcoming Webinars" (for reasons I don't understand!) Once you are in the Online Learning Center Home page, the middle of the page has a highlighted, light blue instruction entitled "Learn More and Register for our Upcoming Live Webcasts". Click on that and you should find the Sept 7 présentations. There is also a sign-up box.

I hope you can find them now: please let me know how it goes.

All good wishes,
Bobby
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