I am a newby!

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Hi, I am new to the community. I’ve been diagnosed with chromosome 5q deletion MDS with thrombocytopenia. I was happy to be told I am low risk with a good prognosis. I am aware that the deletion of a leg of chromosome 5 affects 40 genes and 150 million building blocks of DNA.  I am not really grasping this diagnosis but am wondering how you can have a good prognosis when so many variables are involved that they don’t even know about. My husband and I are dealing well with all of this because I’ve been sick since I was a teenager with different things and have lupus and porphyria and twice have been diagnosed in the with triple-negative medullary breast cancer. I am now getting lab work that my kidneys have a problem which is new. When I look up ‘can MDS affect your kidneys?’ and it says YES!!  How can you predict a good prognosis when things just pop up. Anyway, I am very happy to join all of you in this journey.  Cathy B24. 

  • Hi  and a very warm welcome to the Community but sorry to hear about your MDS diagnoses.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different rare (8 in a million) type of blood cancer CTCL).

    This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms)……. but I do see that you have already found and joined our MDS support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group please click on the link below…….

           MDS/MPN/ET/PV/myelofibrosis (MF)

    …… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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