My experiences

[Pru Browne]

Sophie has asked people to post descriptions of their experience of MDS.

I'm 56, (married, two grown up daughters and four grandchildren) and was diagnosed in August 2004. I had been feeling increasingly exhausted for a couple of years, since recovering well from having a kidney removed and a couple of DVTs in early 2002, but my GP had refused to investigate this (she made it obvious she thought I was malingering, which left me feeling pretty inadequate), so I wasn't picked up until another doctor ran blood tests in response to me saying how tired I was and found I had an hb of around 8 and platelets of around 70. (I'd also been having bleeding gums for several months, but didn't realise the significance of this).

When I was first diagnosed I was given a median life expectancy of 32 months, but in the six and a half years since then I have been very lucky - and am aware of this, and grateful for it, every day! My hb has gradually improved without any intervention, and - apart from a blip in 2005 when I had a bad reaction to the pneumococcal vaccine and was ill for several weeks - is now generally in the 10-11 range. My platelets have also improved and are generally between 160-200. My neutrophils have been on the lowish side but always acceptable. So my prognonis seems to have improved from Intermediate 1 on diagnosis to Low Risk.

I get tired, but it's very manageable (though I don't often go out in the evenings), and I take care to avoid infections (even minor colds etc tend to hit me for six), but am generally well.

I miss working; I was teaching at Sussex University when I was diagnosed, and was unable to renew my contract for the following year (one needs to be able to commit with confidence to being healthy and fully available for at least the following academic year, which is a bit tricky with MDS!) but I suspect that this distance from permanently germ-filled students has helped with the improvement in my symptoms - I no longer have a permanent cold through the winter and spring terms!

I have regular blood checks with a local haematologist, and also go to Professor Mulfti's clinics at King's, but have stayed stable enough, so far, to not need any treatment.

I hope that my history can give some hope and encouragement to people who are newly diagnosed... I do understand how lucky I've been, and hope there are others having similar experiences.

[chris]

Hi Pru

It's so encouraging to hear that your blood counts have improved without any treatment and that you have therefore moved to a low-risk category of MDS. Do your medical advisors have any idea why this is as it seems that we always asssume things will progress with MDS only ever in a bad way?! Are you taking any medication at all? It must have been so hard for you to have to give up a stimulating and demanding job at quite a young age but certainly being in an academic and crowded environment would have put you at higher risk of contracting infections so with hindsight you seem to have benefited. Does it pose constraints with your grandchildren - e.g. babysitting if they are ill?

Apparently there are newer prognostic tools that are being discussed by the MDS international bodies at the moment and this might be more helpful than the IPSS / WHO prognostic scoring systems which can scare the pants off people. (Certainly I was a quivering wreck when first diagnosed in Intermediate-1 risk group - even though I understand the mathematical implication of medians. It would be more helpful if they could let us know the full range of recorded survival in months/years I think!).

Good to know that you are stable and have been so for a number of years and long may it continue!!

Chris

[Birgitta-A]

Hi Pru,
Like Chris I think you are lucky when your MDS has not progressed much since 2004 . The reseachers are reporting new prognostic models quite often. The old ones are from 1997 and since then we have better supportive theraphy and better drugs.

When I got my dx MDS Interm-1 2006 I read at the net that the median survival was 3.5 years and when i look at the latest prognostic model it is 6.5 years. I have RCMD.
http://www.haematologica.org/cgi/content/full/96/3/349
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, transfusion dependent from dx. Thalidomide, Prednisone, Neupogen and Exjade.