Hello everyone.
My husband has just been diagnosed with High Risk MDS, although we're still waiting for the cytogenetics results to come back for more accurate diagnosis. He starts chemo next week.
Just looking for any tips/ info for what to expect and just to connect with others who are travelling this same road.
Sue
Hello! Husband newly diagnosed.
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Re: Hello! Husband newly diagnosed.
Hello Sue. Sorry for late reply. I forget to check in. I think there’s a way I can get alerts to new messages but haven’t figured out how to do it!
Very sorry to hear about your husband’s diagnosis. It must have come as a shock. I am presuming that one of you has joined MDS UK as a member so will have received our useful MDS patient handbook? And also a monthly e-newsletter which gives details of patient support meetings?Alrhough these meetings are broadly targeted at different areas of the country, anybody can register for any of the meetings. If you are not sure about using Zoom, our Office Manager, Caroline,can support you. If you “come along”, you will meet many people who have experienced what you and your husband are going through and draw comfort from sharing their experiences.
I hope by now your husband has received all his cytogenic results so that your doctor can help to advise the best treatment.If you have any concerns please contact Sophie Wintrich who has lots of information she can give you.
Hope you see this response
Best wishes
Chris
As
Very sorry to hear about your husband’s diagnosis. It must have come as a shock. I am presuming that one of you has joined MDS UK as a member so will have received our useful MDS patient handbook? And also a monthly e-newsletter which gives details of patient support meetings?Alrhough these meetings are broadly targeted at different areas of the country, anybody can register for any of the meetings. If you are not sure about using Zoom, our Office Manager, Caroline,can support you. If you “come along”, you will meet many people who have experienced what you and your husband are going through and draw comfort from sharing their experiences.
I hope by now your husband has received all his cytogenic results so that your doctor can help to advise the best treatment.If you have any concerns please contact Sophie Wintrich who has lots of information she can give you.
Hope you see this response
Best wishes
Chris
As
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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Re: Hello! Husband newly diagnosed.
Hi Chris,
Thank you so much for your reply. Yes, I've joined MDS UK, which has been useful.
We get the results of the cytogenetic tests in 2 weeks at his next appointment. (I hope!) Hopefully we will then have an accurate diagnosis and IPSS-R score. We already know it is High Risk and are hoping that the cytogenetics don't tip it into Very High.
Thank you for the helpful info and contact names.
Sue
Thank you so much for your reply. Yes, I've joined MDS UK, which has been useful.
We get the results of the cytogenetic tests in 2 weeks at his next appointment. (I hope!) Hopefully we will then have an accurate diagnosis and IPSS-R score. We already know it is High Risk and are hoping that the cytogenetics don't tip it into Very High.
Thank you for the helpful info and contact names.
Sue
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- Posts: 755
- Joined: 01 Dec 2009 21:52
- Location: Essex
- Contact:
Re: Hello! Husband newly diagnosed.
Hi Sue
Oh the waiting is so difficult! I well remember waiting for mine and just could not focus on anything else!
Let’s hope for good news. Do let us know. How are you both coping? It’s such a lot to take in. We’ve all been there and you have our sympathy.
Take care
Chris
Oh the waiting is so difficult! I well remember waiting for mine and just could not focus on anything else!
Let’s hope for good news. Do let us know. How are you both coping? It’s such a lot to take in. We’ve all been there and you have our sympathy.
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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