I got MDS for Christmas......

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chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: I got MDS for Christmas......

Postby chris » 31 Dec 2014 20:05

Hi to all but particularly to Kirsty and Ian

Sorry to hear of your recent diagnoses and distress. Most of us will have had the same experience of long, desperate waiting for bone marrow biopsy results and then not being quite sure if we have been told the full story.

I was just as panicked at the beginning and, to a large extent, because the course of MDS can be very variable, one never really knows if (and when!) to start worrying! All I can say is:

1. It is NORMAL for bone marrow biopsies to take several weeks to fully process as these days there are a lot of different chromosome and genetic mutation tests performed which are essential to coming to a correct diagnosis and prognosis for your particular type of MDS. Without this full information it is simply not possible to give us as patients the sort of information we need.No amount of ringing up either haematologists or GPs will bring forth this information if it just isn't all ready yet.
2. Sometimes there are clear cut indications right from diagnosis of how serious or mild the MDS might turn out to be but at other times it really is a case of monitoring blood counts over time to see how the disease is behaving. It's not that medical staff are being cagey, it's just that the medical understanding about the development of MDS, although vastly improved over the past 5 years, is still really developing.
3.Health professionals do need more training on how to break bad news to patients... they could at least suggest you talk to a clinical nurse specialist or give patients information about this MDS support group. Were you told about us or did you have to look for yourselves?
4. The anxiety will lessen with time and as you gain more information about what MDS means for you but do speak to specially trained counsellors if you are still worrying a few months down the line.

We all wish you the best and hope that you soon feel better "in your heads" about your diagnosis. Take care and speak to Sophie, post on this Forum and talk to your loved ones. It all helps.

Best wishes

Chris
Chris. (F) Age 67 (2017). 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
Kj447
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Joined: 20 Dec 2014 10:14
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Re: I got MDS for Christmas......

Postby Kj447 » 31 Dec 2014 21:13

Thanks Chris. All very valid points. I don't really have a problem with the time it takes for tests etc. For me, it was about the very cold and inhuman way I was told I had MDS. Handed a leaflet and told you don't fit into any category in it seven days before Christmas wasn't much fun. Not once was I asked if I had any support network (I incidentally don't)
I've since sought out this group, spoken to Monika and my own GP and got my head around it a bit and am feeling much more positive :)

A happy new year to everyone, here's hoping its a massively positive time for us all

Kirsty
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: I got MDS for Christmas......

Postby chris » 01 Jan 2015 20:02

Hi Kirsty

Know just what you mean! I was also told I had this strange-sounding rare disease and didn't even fully catch what the consultant said -"blah blah plastic syndrome" was all I heard! Then not given any further explanation - other than to suggest I didn't Google it or I might scare myself ... but with no further information from the consultant, what else was I going to do!!! This support group was not as high profile on web searches 6 years ago as it is nowadays, so finding it was also quite difficult - not so much now following great work from Sophie, the MDS Committee and everybody who contributes to this Forum, we are now seen as a proactive and reactive group supporting MDS patients from all over the world!!

Glad the talk with your GP helped. They are very unlikely to see more than 1 MDS patient in their career so it is likely to be new to them too and we can't really expect them to be as familiar with this rare disease as the specialists. My godson, who is a GP, has freely acknowledged that I probably know more about MDS than he does!!

Not sure where you live but, as Fiona suggests, you might feel more confident in your care if you asked for referral to a Centre of Excellence where the clinicians have more knowledge and understanding of MDS and the effects it has on us. Details on this site or from Sophie.

Yes, wishing us all well in 2015.

Take care.

Chris
Chris. (F) Age 67 (2017). 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
Kj447
Posts: 6
Joined: 20 Dec 2014 10:14
Contact:

Re: I got MDS for Christmas......

Postby Kj447 » 02 Jan 2015 00:17

What I keep hearing is how unusual I am. I think it's because I have no symptoms, only have low platelets (which have gone back up above 100 in the meantime) and am in my 30s. For once in my life, I'd rather not be "special".

I spoke to Monika last week who informed me that my closest CofE is actually closer than the hospital I'm currently referred to so I shall be asking for a referral there when I eventually see my consultant haematologist on the 26th.

Happy New Year

Kirsty
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: I got MDS for Christmas......

Postby chris » 07 Jan 2015 20:02

Hi Kirsty

Yes, sometimes you don't want to be the one in a million! My type is a rare sub type which makes me one in a trillion but then my kids have always said I am "special"!

Going to a Centre of Excellence will make you feel more confident in your care - hopefully- and being geographically closer is an added bonus.Many MDS patients don't have symptoms which is good in many ways but you do have to be aware of the implications and take more care e.g bleeding and bruising are consequences of low platelets.I carry hospital notes in case I should be involved in eg a road traffic accident as my platelets are 75.

Hope your next consultation goes well.I posted a generic list of questions to Red on this forum so hopefully you can find them if you search my posts!

Best wishes

Chris
Chris. (F) Age 67 (2017). 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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