Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't know

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TONG17
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Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't know

Post by TONG17 » 06 Jan 2023 19:40

:)
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chris
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Re: Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't k

Post by chris » 07 Jan 2023 00:03

Hi there. So sorry to hear your diagnosis. I’m wondering if your post was not completed so please do come back and let us know how you are. Just click the Reply to this post. This diagnosis surely can make you feel quite alone but there are plenty of people on this forum who have been in your situation and who can offer some comfort and reassurance.

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.
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SHPR4
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Re: Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't k

Post by SHPR4 » 16 Jan 2023 13:28

Hi
I was diagnosed with MDS just before Christmas. My Hb is low so I’ll eventually be on the transfusion trail I guess, so do let us know how you get on with it all
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chris
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Re: Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't k

Post by chris » 16 Jan 2023 22:09

Hi SHPR4

Sorry to hear about your MDS diagnosis. Pleased to hear you’re not yet needing transfusions. Not sure what you have been told about your MDS sub-type, your genetics and mutations, and your risk group? But if you think this is appropriate for you, please check out the recent session on low-risk MDS led by Dr Dominic Culligan.

https://mdspatientsupport.org.uk/low-ri ... -patients/

Let us know how you get on in the coming months. Also look out for patient online support meetings in the E-newsletter and on the website.

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.
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RUSE7
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Re: Hello to all, diagnosed roughly 6 month's ago. Already had 3 units of blood and 1 unit iron. Feel alone and don't k

Post by RUSE7 » 17 Jan 2023 10:56

Hi SHPR4 & TONG17

I was diagnosed in Dec 2018 just after my 50th birthday with really low Hb just before I was meant to go on holidays. It was so low they wouldn't let me fly and I had to get all the investigative tests done just before Christmas.

My specialist referred me to an MDS specialist centre at Kings College in London and they've had me on EPO for the last 4 years and that has got my counts up to a really good level. So saying, EPO doesn't work for everyone, but there may be other options for you other than going straight to regular transfusions to see you through.

If you're not already being treated at a specialist centre, see if you can get a referral to one if options other than transfusions aren't explored. There's a list on the MDS website https://mdspatientsupport.org.uk/what-i ... s-centres/

As Chris says, let us know how you go.

All the best, Ronnie
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