I got MDS for Christmas......

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Kj447
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I got MDS for Christmas......

Postby Kj447 » 27 Dec 2014 10:46

Just thought I'd say hello.

I had an appointment on the 18th for bone marrow biopsy results and was told "you've got MDS, here's a leaflet, but yours isn't covered in it". To say I'm stunned doesn't quite cover it......

I'm not due back to the hospital until the end of January and I'm not entirely sure what I should be asking or what options are open to me......any suggestions would be gratefully received!

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

Postby Scubadude » 27 Dec 2014 19:22

Hi Kirsty.

I beat you by a whole 8 days! Basically the same for me. I went in to A&E on the 1st and got the diagnosis on the 10th (i think).
Since then my treatment has been blood transfusions (3 lots now) to top me up on red cells. Not had platelets yet but they will do that if required. Have they said you are Neutropenic i.e. very low white cell count?

I'm back to the local hospital to see my consultant Tuesday and will ask some more questions then. I know they have referred me to Kings for a bone marrow transplant to be considered but I am aware that a lot of factors affect whether or not that happens, but its something that may be put to you too depending on your circumstances.

Like you i was told that i didn't really fit in to any of the catagories in the booklet and several people have said to me to treat that booklet with a degree of caution as it can come over as a bit alarmist.

Hope you get more answers soon. My feedback for you is limited being a newbie myself :)

Regards
Ian.
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
Kj447
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Re: I got MDS for Christmas......

Postby Kj447 » 27 Dec 2014 19:56

Thanks for getting back to me Ian,

I've had no symptoms.
I originally had a blood test for an allergy and was called back because my platelets were a "bit low".

I believe my red and white cells are ok, just my platelets are below par and my bone marrow sample has been sent off to someone else to look at.

I'm still in shock with it all as I was just literally handed the leaflet, told they would stick with "watch and wait" and sent on my way. I've since tried to call the hospital to speak to someone, anyone about it with no luck at all.

From what I understand this is pretty serious and I'm not sure why I have to wait until the end of January......

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

Postby Scubadude » 28 Dec 2014 05:18

Completely understand your worry. On the plus side loo at it this way, if your blood results had been very bad you wouldn't be waiting until the end of January and would have been having transfusions already.

It does sound like your hospital have been poor at explaining where you are at but that may well be that they need to get that biopsy result back. My own doctors were reluctant to commit to a specific diagnosis until the biopsy had been examined by Kings and that process takes several days. They said that treatments can vary a lot so it was essential to get that result back before they could discuss the next step with me.

I suspect yours is the same but they havent explained that very well.
I would call them, ask for the head of the haematology dept and have a moan about lack of information. Dont wind them up as that would be counter productive but I would express my concern that you havent been given adequate information etc.

Let us know how you get on and don't panic :)
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
Kj447
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Joined: 20 Dec 2014 10:14
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Re: I got MDS for Christmas......

Postby Kj447 » 28 Dec 2014 18:37

I wasn't exaggerating when I said I was handed a leaflet and sent on my way.
Friends have told me all along that if it was serious they'd rush it more than they have.....then this.

It's driving me a bit mad as I'm on my own and there's not a whole lot of information out there that's pertinent to a 30 something who only has low platelets.

I have left several messages now with the hospital and heard nothing....
Scubadude
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Re: I got MDS for Christmas......

Postby Scubadude » 28 Dec 2014 19:47

How about a call to your GP, explain that you feel its been handled badly and ask them to call on your behalf. Or, is the hospital run by a trust and do they have a number to call to get it all a nudge? Last but not least snotty email or letter to the head of the hospital itself. After that one thing that should get results for you is a call to the local press but none of that should be necessary.
Does sound like they have dealt with this badly. You shouldn't to my mind be left with that degree of concern over lack of info.
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
Scubadude
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Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent
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Re: I got MDS for Christmas......

Postby Scubadude » 28 Dec 2014 20:22

You have a pm Kirsty :)
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
murrayfs
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Re: I got MDS for Christmas......

Postby murrayfs » 29 Dec 2014 10:56

Hi Kirsty,

As a fellow MDS patient I sympathise with your situation, but can also tell you that most newly diagnosed patients will have definitely experienced similar things at their local hospital, and therefore the anxiety that you are feeling now. MDS is such a rare disease that most local hospitals and GPs don't really have enough knowledge to talk about it specifically.

My main advise to you would be when you have your next appointment is for them to clearly tell you which type of MDS you have. There are many different types and some are low risk and some are high risk. I suspect given they are not treating you with too much urgency and are talking about watch and wait that you are likely to be low risk - but this is something you need to find out. I would also ask to be referred to a Centre of Excellence for MDS. There are a number of hospitals around the UK that are designated as centres of excellence and this is where you will get access to specialist doctors and nurses that know far more about the condition of MDS than your local hospital and GP certainly do.

If I give you an example of my own personal journey with MDS as it might help...... I am 48 now but was diagnosed with MDS 5q- back in 1999. I live in the West Midlands but was referred to Kings College hospital in London as they wanted to consider bone marrow transplants. The doctors at Kings decided that a bone marrow transplant was too risky (at that time) and as I was low risk I was put on a watch and wait option too, which simply meant regular blood tests. To cut a long story short there have been many advances in drug treatments over the years and a number of years ago I took part in a drug trial and still take that drug now (Lenolidamide) which helps to maintain my condition. It's not a cure, but enables me to lead a normal life without the need for blood transfusions, so this is currently where I am - all those years beyond my original diagnosis in 1999. There are new drugs being developed all the time - so although transplants are options for some patients, there are other options which may not require this at all.

The point I'm making here is for you to demand more information from your hospital and get them to refer to a specialist centre (you should be able to find a map on the website here of where centres of excellence are in the UK). I live in the Midlands and could go to the Queen Elizabeth hospital now in Birmingham but I continue to travel to London every 6 months as I am really happy with that. My treatment now is to visit my local hospital every couple of months for blood tests and go to Kings as the centre of excellence every 6 months.

All types of MDS are different and all require different treatment options so there is certainly no "one size fits all" with this disease - but it is vital to get in front of medical professionals that truly understand the condition and sadly not all local hospital consultants do - hence my recommendation about a centre of excellence. If you can't find the info on the website - give the info line a call - and Sophie or Monika will be able to help you - they are really helpful and knowledgeable. Good luck and keep us posted on how you get on. regards Fiona
Fiona - Female, age 52, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
Kj447
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Re: I got MDS for Christmas......

Postby Kj447 » 29 Dec 2014 11:14

Hi Fiona,

Thank you for your reply. I'm quite a logical person and like to know all the facts and I think this lack of information has sent me off into a spin. I believe it is just my platelets that are low.

I spoke to Monika last week who sent me lots of information.

Am also going to see my GP this afternoon who might help (I live in hope!)

Thank you again

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

Postby Glynjo » 29 Dec 2014 21:28

Hi Kirsty and Ian,

Like you am new to forum (last couple of months) it's a good place to get information and support and to exchange views, frustrations in a safe way.

I think you have already got some good advice here ........ But it does highlight we need to do more to help some health professionals

Keep in touch

Glyn

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