Recent diagnosis of Mum (UK)

[Clare Carter]

Hello from the UK. In September after a routine blood test for arthritis my dear Mum was given a diagnosis of MDS EB 2. This came as a huge shock to everyone as she has no symptoms at all. She was given a prognosis of 6 months at the start of all this, from my research this seems to be the general ball park figure given to those with her subtype and at her age (79). We are now two months in and she has started on Azacitadine and she still has no symptoms. She is anaemic and has low vit B levels both of which she can manage with medication. Is this unusual to be so well? It is hard to cope with the concept that she has a terminal illness and very limited time and yet looks wonderful and feels completely well. I feel like I am waiting for a sudden deterioration. I guess I am just wondering about the experience of others and some reassurance.

[Rosemary]

Hi Clare,
I’m 72 and had the same diagnosis recently. I had the blood test because of extreme tiredness but now with regular transfusions I’m quite well and functioning normally. My doctor is expecting to see a progression to AML at my next bone marrow biopsy and it’s all downhill from there apparently. That may be what they’re expecting with your mother. I’m not having medication yet and frankly I’m wondering whether it’s worth it as there is no cure. Is your mother having any reaction to the azacitadine?

[Clare Carter]

@Rosemary, she is managing really well with the Azacitadine, she takes laxatives and anti emetics and they seem to mitigate most issues.She has some joint pain, but it is unclear if this is treatment, disease or arthritic pain (the original reason she went) The dr has made it clear that there is a risk of progression to AML, but we are not there yet. Mum doesn’t need transfusions yet apparently, but again the dr has told us this will be part of treatment at some point. I am glad to hear that you too are well, but sorry to hear of the diagnosis.

[sandyg]

hi clare. i saw an interesting on-line talk from a haematology nurse called Kirsty Crozier about quality of life for us mds patients. one of her main messages was that everyone’s mds is different, and we will all find different ways of managing it. the meeting was arranged by mds.uk, who are hugely helpful. are you already familiar with them? heaps of luck to you and your mum.

Nationwide Patient Support Meeting

[Clare Carter]

@sandyg yes thank you, I have been in touch with the UK charity and they have been helpful. We are a little more bashful about asking direct questions in the UK and it is hard to get answers around difficult subjects such as prognosis, hence coming to this site. Mum remains well, she is doing light exercise, seeing friends and family and coping well with treatment, which is the main thing. Best wishes to you

[sandyg]

i believe it’s hard to get those kind of answers, ‘cos there are no definitives. if you join one of the on-line meetings, you’ll see everyone coping with different issues. i do really well – some breathlessness fatigue, occasional bouts of what i call ‘wonkiness.’ then every now and again, i get an infection that leads to sepsis and it nearly kills me. that’s why i’m late replying. i’m in hospital right now, but haven’t been since march, and had a relatively smooth time of it in between. your mum sounds like she’s doing the right things though. similar to me. i call it the dr.dre regime. diet, rest, excercise. best of luck to you and her

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