In June this year my Dad (88) was diagnosed with Myelodysplastic syndrome (MDS). At the moment it’s only impacting his red blood cells. His white blood cells and platelets are “normal”. He is severely anaemic and therefore always tired and needs a blood transfusion once every 3 weeks. 4 months on we just got the genetic results from his bone marrow biopsy and sadly it showed the presence of TP53 mutation (10%). Whilst he also has the SBF31 mutation (low risk) which at the moment is the dominant mutation, presence of the TP53 has put him in the high risk category with a poor prognosis - although doctors won’t give an indication of life expectancy.
There don’t appear to be any signs of leukaemia yet but I assume it is a matter of time and this is an inevitability.
Given his age, bone marrow transplant isn’t an option and chemo isn’t recommended. Aside from the blood transfusions he has a weekly growth factor injection but that doesn’t seem to be doing anything.
I’m not sure what his options are. It sounds as though they will continue with transfusions for now. But what happens when things worsen and if he gets Acute myeloid leukaemia (AML) - will they then get him on low dose chemo or will he just be left to die because of his age?
We are so sorry to hear about your Dad’s diagnosis of Myelodysplastic syndrome (MDS), we can imagine this is a difficult time for you and your family.
Please know that you are not alone and if you would like to talk through anything with one of our support services nurses, do get in touch on 0808 2080 888.
It may be worth having a discussion about how you are feeling and your concerns with his clinical nurse specialist or haematology consultant, they will be able to have a look at his genetics and recent blood tests and give further insight/ a plan about if he was to progress. I’m sure his team will do their best to support you and him and wouldn’t want you to feel that his would be ‘left to die’.
Haematology teams base treatment options on fitness levels, genetics, blood result trends, biopsy results/disease type and risk, age and patient preference. They aim to make decisions with the patient alongside what they think is the best outcome. It’s important to keep them updated with how you and your dad are feeling so that they can provide the best support they can.