Father just diagnosed

Please post here your experiences of MDS as a patient, carer, family or friend

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Father just diagnosed

Post by craig41 » 02 Sep 2013 19:00

Hi there,
I have just joined the site after just finding out my father has been diagnosed with MDS.
At the moment i am quite frustrated as my father is quite ill and an inpatient at a hospital 20 miles away.
I have visited and had a meeting with the haematoligst,who has baffled me with terminology.I wonder if you could perhaps explain her findings in plain english and what the future may hold for him?
I would also appreciate if you could suggest if there is anything specific i should be asking when i see the consultant this week.

My fathers blood counts as of last friday are as follows
HB 8.6
WBC 1.5
RBC 2.69

Neutrophils 0.8
Lymphocytes 0.6
Monocytes 0.1

A marrow sample has not been taken, as the consultant felt my father is too weak, and feels strongly that chemotherapy would not be an option.My father is 77, and although his GP was informed 5yrs ago, (at the point whern he was diagnosed with Bi-Polar) that his white cell count was abnormal, nothing was done about this.
I perhaps should mention that my father was also diagnosed with Mixed Dementia 5yrs ago.

Thanking you in advance
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Father just diagnosed

Post by chris » 03 Sep 2013 10:40

Dear Craig

Sorry to hear about your Dad. His blood counts certainly seem typical of MDS and, very generally, this might be affecting him as follows as he has low levels of red cells, white cells and platelets:

Low Hb (haemoglobin) - he would feel very, very fatigued and possibly also have chest pains
Low white cells/neutrophils - he would be at greater risk of contracting infections
Low platelets - he would be at greater risk of haemorrhaging or bruising

The best person to help you de-mystify the terminology is Sophie Wintrich who is the patient helpline contact. Ring her using the contact number on this site. Without a bone marrow biopsy, it may be difficult to be more precise about your Dad's type of MDS and his prognosis, but, given his other difficulties, one could understand that the consultant may not want to put him through what can often be a very painful procedure just to get more information when the treatment options for him may be limited due to other medical considerations, least of all the distress of procedures if somebody is also suffering from dementia.

There have been other people posting on here whose parent/relative has had dementia as well as MDS and it may be helpful for you to read them. I have had a search around to jog my memory and below I direct you to one string of those posts. Or you can use the search facilty yourself to find posts containing Dementia or Alzheimer's which may be relevant.

http://mdspatientsupport.org.uk/forum/v ... %27s#p1761

It may be that the most appropriate treatment for your Dad is supportive care i.e. blood transfusions to increase his Hb and prompt treatment of any infections.

It is frustrating when you are not on the doorstep and have limited opportunities to "catch" the specialist. There is a lot of information about MDS on this site, on the NHS website and Macmillan, link here:

http://www.macmillan.org.uk/Cancerinfor ... romes.aspx

Hope this helps

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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