Mds bone marrow cancer?

Hi  and a very warm welcome to the online community

I'm very sorry to hear that you've been diagnosed with MDS Pancytopenia and that you have been told that it could become AML.

I don't have this myself but noticed that you hadn't had any replies. I don't know if you've seen this information from Macmillan about MDS but thought it might help if you haven't.

You might also like to join the acute myeloid leukaemia group (AML) to see if there's anyone there who has MDS or who has had it.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

There is also a MDS UK Patient Support Group which you might find useful to take a look at.

x

hi there Jacko. I'm sorry to hear your diagnosis. I was given the same diagnosis in April 2017 and I too was pancytopenic. Your consultant may be technically correct when he says there isn't a "cure" from his point of view but I would have thought that he might have mentioned a stem cell transplant as a potential way to treat the disease.

I had my own stem cells back in 2015 when I was diagnosed with Hodgkins Lymphoma for the third time. Then in 2017 I was diagnosed with Hypoplastic Myelodysplasia - MDS. Like you I was given the news by a stern faced and very sorry consultant who basically suggested that there was little hope for me. Then I was transferred to a different ward and a different team and, while not talking about a cure, they did discuss the option of a donor transplant. To cut a long story short 2 and a half years later I'm still here and doing well. Let us know how you get on.

Hi it was really nice of you to reply

As i have not been online for a while 

Update my consultant rang me and told me i have aml 

First round of chemo done looks like it worked but no dancing just yet time will tell

Its nice to know others are out there with similar stories 

I feel they i mean medical people know whats happening too us but dont say until its proven