New member recently given diagnosis of MDS

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Maggie

New member recently given diagnosis of MDS

Postby Maggie » 08 Feb 2010 12:18


There has been considerable hesitation on my part before becoming a member of MDS Patient Support but I am persuaded by one of my three daughters, each health professionals but living quite long distances away, that I will find this helpful.

I was given the diagnosis when going to see the haematologist on 30th December. A low platelet count was picked up when referred for cholecystectomy early September last year. The operation could not go ahead. Fortunately there had been some doubt as to whether the gall bladder had been the cause of the intermittent acute pain. It took some time for blood results to come back and for one in particular which revealed that this was not, as I had been reassured all along, most likely a simple idiopathic thrombocytopaenia. A bone marrow biopsy confirmed MDS. It was a huge blow when I asked about treatment to be told there wasn't any!!!

My platelets are 'dropping like a stone' and, yes, I am having difficulty in coping with this. Anxiety and overwhelming sadness. By some I am told I should ask for the prognosis and by others advised 'it is better not to know'. Obviously it would be a hugh relief to find that I came into a better category but I may not and I am, I have to admit, too scared to ask - pathetic. I have not had any words of encouragement so far to make me think that this may be so.

There is a further complication in that I have been waiting for many many years to move nearer to the family. My husband has finally accepted that this would be a good idea. The plus side for moving - I have never been really happy in the thirty years we have lived in Colchester - one thing after another has gone wrong - it would be a huge relief to move on and it would be wonderful to see a little more of two of our daughters, the third living in Abu Dhabi. Possibly a downside is that we will not know anyone of our age in Cheshire and we have a really good GP here who has told me they will give 100% support. I know nothing re haematologists specialising in MDS in Cheshire. However, the house and garden are very soon going to be too big and I would like to see my husband settled in a more suitable property with family near and, yes, I really would like to be a part of this and hopefully have some time there myself.

Feedback from other members would be so welcome.

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

Re: New member recently given diagnosis of MDS

Postby chris » 08 Feb 2010 20:49

Dear Maggie
Only you will know if and when is the right time to seek out more information. All I would say is, at the very least, your consultant should be able to tell you which category of MDS you are in. If you don't have this information, all the general information you check out can be meaningless and more worrying as there is a huge variation of prognoses about the different types. If you need a useful booklet I would recommend 100 Questions and Answers about MDS which Sophie Wintrich can probably send you. You should know that the course of MDS is very variable and some can rumble on for years and wouldn't even give any symptoms. It is often only picked up when doing blood tests for other things - as yours was.

I, too, was hugely panicked, sad and scared after my diagnosis - who wouldn't be?! However, it's not true to say that there are no treatments for MDS. There is only 1 treatment that is a possible cure and that is stem cell transplant. There are also supportive care procedures (blood/platelet transfusions etc), there are drug treatments and trials - it all depends on the type of MDS you have and other factors.

If you do decide to move to Cheshire, you shouldn't worry about finding a consultant as there is an MDS Centre Of Excellence in Leeds (next county but hopefully not too far) and this is the address and consultant details:Leeds General Infirmary
The Leeds Teaching Hospitals, David T. Bowen, MD.

"Getting your head right" after this diagnosis is something that takes time. I'm in a better place now than I was 6 months ago and, some days, I don't even think about it!! If it helps, I am setting up an MDS Support Group in Essex and if you reply using PM, I can give you my e-mail address and phone no. There is another lady in Colchester and you might be able to meet up and support each other or all 3 of us could rendezvous in Chelmsford ( I am in the south of the county).

Getting in touch with the MDS Patient forum and going to a meeting in Cambridge was the start of me being less scared and more positive about the possible outcomes of the illness... but it's still a bit of a journey...

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
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: New member recently given diagnosis of MDS

Postby janetstanford » 01 Nov 2010 18:36

Maggie wrote:There has been considerable hesitation on my part before becoming a member of MDS Patient Support but I am persuaded by one of my three daughters, each health professionals but living quite long distances away, that I will find this helpful.

I was given the diagnosis when going to see the haematologist on 30th December. A low platelet count was picked up when referred for cholecystectomy early September last year. The operation could not go ahead. Fortunately there had been some doubt as to whether the gall bladder had been the cause of the intermittent acute pain. It took some time for blood results to come back and for one in particular which revealed that this was not, as I had been reassured all along, most likely a simple idiopathic thrombocytopaenia. A bone marrow biopsy confirmed MDS. It was a huge blow when I asked about treatment to be told there wasn't any!!!

My platelets are 'dropping like a stone' and, yes, I am having difficulty in coping with this. Anxiety and overwhelming sadness. By some I am told I should ask for the prognosis and by others advised 'it is better not to know'. Obviously it would be a hugh relief to find that I came into a better category but I may not and I am, I have to admit, too scared to ask - pathetic. I have not had any words of encouragement so far to make me think that this may be so.

There is a further complication in that I have been waiting for many many years to move nearer to the family. My husband has finally accepted that this would be a good idea. The plus side for moving - I have never been really happy in the thirty years we have lived in Colchester - one thing after another has gone wrong - it would be a huge relief to move on and it would be wonderful to see a little more of two of our daughters, the third living in Abu Dhabi. Possibly a downside is that we will not know anyone of our age in Cheshire and we have a really good GP here who has told me they will give 100% support. I know nothing re haematologists specialising in MDS in Cheshire. However, the house and garden are very soon going to be too big and I would like to see my husband settled in a more suitable property with family near and, yes, I really would like to be a part of this and hopefully have some time there myself.

Feedback from other members would be so welcome.

Maggie

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