Newly diagnosed

FormerMember
FormerMember
  • 2 replies
  • 22 subscribers
  • 278 views

Hi all

Thanks for letting me join 

I have just been diagnosed with myeloid dysplasia syndrome (mds) and told I’m going to need chemotherapy and if I don’t carry the gene a stem cell transplant. I’m still in shock at the moment and so are my family trying to process everything. It’s the unknown I’m struggling with at the moment but will se my haematologist on 22 nd June with a long list of questions and hopefully I will know a bit more. 

  • Hi  and welcome to the Online Community but sorry that you had to find us and especially sorry to hear about your MDS diagnosis.

    A blood cancer diagnosis like this can be very challenging but you may find talking with others who are walking the same type of cancer journey will help you navigate this difficult time.

    I was diagnosed back in 1999 with a rare, incurable, hard to treat Skin Non Hodgkin’s Lymphoma so understand this journey and as part of my journey I have had 2 Allo (donor) Stem Cell Transplants.

    We have had a few folks with MDS pass through our dedicated Stem cell transplant group and there are a few folks with MDS in our Other cancers group.

    To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.

    You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'. 

    It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available.

    This service provides lots of cancer information, support, financial guidance or just a listening ear.

    We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Happy to talk more on this thread but will look out for you in the other group.

    All the very bestz

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks so much