husband diagnosed with MDS, August 2010

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

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hebeho27
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Joined: 30 Sep 2010 11:39
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husband diagnosed with MDS, August 2010

Post by hebeho27 » 01 Oct 2010 11:16

My husband has been told he has low risk Refractory anaemia, apparently he has had it for at least 4 years, a routine blood test he had was not followed up at the time, Doctor's mistake. His specialist at Truro told us he has 4 years to live, and then told us about the possibility of it turning into Acute Myloied Luekemia, he would then have 3 to 6 months to live. He finished off by saying, go home and forget about it and enjoy ourselves. My husband is due to see his specialist in October for a review and blood test results. My husband is 66 years old, fit and healthy, or so we thought! Should I get a second opinion, we don't know too much about his tests, but will ask more about them at our next appointment, he is on watch and wait at the moment, don't understand anything, can any one help me?
lynnee
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Joined: 08 Dec 2010 08:52
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Re: husband diagnosed with MDS, August 2010

Post by lynnee » 10 Dec 2010 08:12

Hi there sorry to hear about your husband. I'm new to the Forum but thought you might be interested to know I was diagnosed with very similar in year 2000 and felt really panicky at the time. I had been fairly fit, was 45 and had occasions when I was anaemic. My haemotologist is good but not always very good at communicating what is going to happen etc(I think he feels its better to play everything down after my initial panic. At first it was blood transfusions and they discovered my brother is a perfect match for bone marrow transplant... then everything calmed down. I had high iron levels so I was put on eprex injections instead they worked for a while then didn't. We tried Aranesp injections and bingo I've been on them ever since! My haemoglobin level is usually maintained around 10.. So here I am 10 yrs later wondering what will happen next? At first I reduced my hours of work and moved closer to home. Last year I saw a job advertised I wanted to do, took the plunge and went for it. Unfortunately its now a full time post and I have now been feeling the effects and thinking I may not be able to manage full time anymore. Try not to worry about the prognosis you may read etc or be told because I believe there is no 'normal ' for this condition and unless it turns to medium/high risk no-one really knows what will happen. I do hope your husband is still well and you have managed to get more helpful advice. If anyone else reading this has any info about levels of iron and effects and liver disease with MDS I would be really interested and grateful to know. I have felt ill now since Sept, in hospital twice with severe stomach pain (have had this in the past last time 2 yrs ago), had raised liver function tests and have an iron level of 906, which my haemotologist disregards as it's better than it was originally with transfusions 1200. Is this making me unwell or is it the prolonged use of Aranesp? I also have paroxymal AF which started about 2/3yrs into diagnosis. Take care everyone out there.
hebeho27
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Joined: 30 Sep 2010 11:39
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Re: husband diagnosed with MDS, August 2010

Post by hebeho27 » 05 Jan 2011 13:49

Hi Lynnee, Thankyou for answering me, my husband has been told that he has no chromosome abnormaloties, and his condition hasn't changed. He is fit and well at the moment, and his oncologist has now changed his mind on my husband's diagnosis because of the chromosome results, he now says his life expectancy is not an issue and he will probably live for decades, I hope he is right, but he will be monitored at three monthly intervals for the next year. I am still uncertain, I would like a second opinion, but will wait and see what happens with his next blood tests. I have received a book full of information from Sophie and this has helped, perhaps this would be of some use to you, I am still new to all this. I hope all is going well for you and thankyou again for answering my query.
Hebeho27
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