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 again Cathy B24 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have MDS but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) , incurable but treatable type of CTCL - NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment and I do see that you have connected with the wider group conversations.
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups the one I attend does have a few folks with MDS in it so worth checking.
The Macmillan Support Line is 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. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out https://mdspatientsupport.org.uk for some good information and have various support platforms.
Always around if you need further help or just want to talk.
