new diagnosis

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

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susan devaney
Posts: 1
Joined: 30 Jul 2010 19:47

new diagnosis

Post by susan devaney » 01 Aug 2010 22:32

Hello everyone
I have just joined the forum as my partner has suddenly been diagnosed with MDS. He was admitted a week ago when the GP saw low rbc, wbc and platelet counts after he had complained of fatigue. hb was just 5 but is 12 now after transfusions. He has had bone marrow biopsy and starts chemo on tuesday. Blasts are 11%. I think he has raeb 2 but this hasn't been confirmed. I just wanted to know if anyone has any advice as to what to expect with the chemo and generally? We are just in shock and still haven't really grasped prognosis Any advice at all from anyone who has been through this would be so much appreciated. He is 52 and fit and healthy.
Posts: 620
Joined: 01 Dec 2009 21:52
Location: Essex

Re: new diagnosis

Post by chris » 13 Aug 2010 10:22

Hi Susan

So sorry to hear of your husband's diagnosis of MDS. It certainly is a bit of a shock particularly if one has been fit and healthy - and relatively young.

The internet is a scary place re MDS but sometimes you feel that is your only option. I found the 100 Questions and Answers booklet about MDS to be helpful and informative. You can get a copy from Sophie whose details are on the website here. Also, going to a Patient Forum was quite comforting for me. There is one coming up in September in London and one in Cambridge in November and you book places through Sophie. Not sure where you live but there are others planned for the following year though that seems a long way off for you, I guess. You might also chack out the contacts section of this website to see if there is anybody in your local area as you might want to set up some support.

Other than that, you just need to keep asking questions of your doctors. Some hospitals have a clinical nurse specialist who has a support and information role. Ther are some hospitals which the MDS Foundation has designated Centre Of Excellence and some people have felt that they would want their care transferred there and it is an option but again travel, cost and convenience also need to be taken into account.

I wish you and your husband well as he goes through his chemotherapy.

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