Newly diagnosed-Graham

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

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JGJ
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Newly diagnosed-Graham

Post by JGJ » 27 Nov 2012 12:23

Just to introduce myself to the Forum-I am 66 and have recently been diagnosed with 5q minus syndrome,presently going through all the anxiety and and general turmoil of having this life changing diagnosis.Have been anaemic for about a year and diagnosed with Crohns disease which intially thought to be the cause.All plans for my wife and myself for the future seem to be in abeyance and its difficult not to have gloomy thoughts. I would welcome any comments from others with 5q minus and what it actually means for them.The information regarding prognosis I have found on searching seems so variable it adds to the anxiety.At present I have had just one transfusion and will find out next week at Cambridge the final karyotyping result.Hoping someone has further infomation. Sincerely Graham
chris
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Re: Newly diagnosed-Graham

Post by chris » 28 Nov 2012 14:36

Dear Graham

Welcome to the Forum. As ever, the best suggestion I can make is that, if you haven't done so already, you contact Sophie Wintrich on the Patient Support Helpline 0207 733 7558 as she will be able to give you a lot of information and hopefully reassurance about your recent MDS diagnosis. It might be worth waiting until you have the full results of your bone marrow biopsy as the chromosome information is helpful to include. It is an anxious time just after diagnosis without the full information and with the world of Google waiting to scare you! But hopefully, when all the results are in you will be able to have a discussion with your clinicians about your treatment plans. You mentioned Cambridge, so are you at Addenbrookes? I go there for my care- even though I live in Essex - as it is a Centre of Excellence for MDS. They have an excellent team up there and do also ask to see a clinical nurse specialist as she can give you maybe a bit more time than the consultant to discuss any concerns might - though I have to say I am always pleased at how concerned they are that I don't go away with any burning questions.

At a recent MDS UK Forum I attended with many clinicians from all over the UK, there was a whole session on -5q syndrome so please be reassured that there is an enormous amount of research going into that specific sub-type and also that the consensus is still that it is considered to be a relatively benign sub-type of MDS - one that has a specific treatment option.

Do search the posts on this Forum as there is one specifically on Deletion 5q and treatments.

I hope you will soon start feeling less gloomy about the future, hard to imagine now I guess but we have all "been there" and it's not a nice place to be but gradually, you will find that it sdoesn't occupy your thoughts every single minute and you can focus on "normal" life again.

Best wishes

Chris
Chris. (F) Age 69 (2019). 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
JGJ
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Re: Newly diagnosed-Graham

Post by JGJ » 29 Nov 2012 08:51

Dear Chris,
Many thanks for your kind reply and spending the time to give advice.Iknow i will have to wait for the final diagnosis but boy,it is difficult!After that i wwill contact Sophie .Many thanks again and I wish you well coping with your own problems,from what I read on the blog you really are a brick. Sincerely Graham
chris
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Re: Newly diagnosed-Graham

Post by chris » 29 Nov 2012 12:07

Dear Graham

Oh, the waiting!! That is so hard. When I was waiting for my first lot of chromosome results from my bone marrow biopsy - which always by the way seem to take a good couple of weeks after the diagnosis of MDS - I nearly went mad - no joke. I knew they were due around October half-term, 2009, and my consultant had already told me when the BMB was done on October 3rd that he would be away with his family then. So, hearing nothing after 2 weeks, I started ringing his secretary. Never any reply so I would have to leave a message and as the days leading up to half-term got nearer, my messages got even more frantic. I am embarrassed to think what I might have said but many of the messages ended with sobbing pleas for him to contact me. Nothing. No response from the secretary. I felt so isolated. The Friday afternoon before half-term I had virtually given up hope and was in "a bit of a state" when at around 5 o'clock he rang!! Talk about last minute.... but no apologies or any sympathy. He was very blase and just said that all the chromosomes were "normal" so nothing to worry about - see you in clinic in a couple of weeks so we could discuss the results! More waiting!

To be honest, you say I am a brick (how kind!) but I was in a very bad way mentally 3 years ago and would not have been able to support anybody else .........until I went to my first MDS patient forum at Cambridge in November 2009 which did mark the end of the feelings of terrible isolation and the beginnings of hope. This discussion forum, too, seems quite cathartic. An odd thing perhaps but as none of us are likely to run into any other MDS-ers out there in the street, it is a small substitute for contact which helps at least with the feelings of isolation.

So, hang on in there, Graham, talk to your loved ones about how you feel, ask all your questions at your next appointment, speak to Sophie. If you live anywhere near Cambridge there is an active Anglia Regional group which has regular meetings and they are a lovely lot - had met a few of them on the 3 Cambridge Fora I attended. See th Home Page and Events pages on this site for dates of their next meeting - one coming up in December I think?

Take care

Chris
Chris. (F) Age 69 (2019). 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
steviek
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Re: Newly diagnosed-Graham

Post by steviek » 27 Dec 2012 16:40

Hello Graham, I have the same 5q- it is a bit of a shock but like most things you can get used to it. To me the most important thing is to believe in yourself and the scientists, that between us we will win.
I have 2/3 units of blood every 3 weeks and was found to have this in August 2010. It happened soon after my 50th birthday, but I'll tell you I had a great party before it.

I am a positive person, and I hope I can pass this to you, I've had ups and downs, but I have them about most things. You have to be positive, the amout of work getting done out there is fantastic, and one day soon I believe we will be cured, or at least live with it. We can and we will beat it. I wish you well, enjoy what's out there and go for it.

Steviek
Sarah Reakes
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Re: Newly diagnosed-Graham

Post by Sarah Reakes » 29 Dec 2012 12:48

Hello Graham,

Welcome to our Forum. I've been meaning to post before now, but with one thing and another hadn't managed to get to it. Also Chris and Stevie had in my opinion, pitched their responses perfectly to help you to deal with this new diagnosis and to help you to put it into perspective. I also have 5q del and was diagnosed last June 2011 and believe me I went through all the anxiety and disbelief that you have conveyed. If you search this Forum you will come across my initial posting and you will see what I mean!

Believe it or not, those of us with this particular variant of MDS are actually lucky to have been diagnosed with it, as it really does come with a pretty good prognosis compared with others. There is also a specific drug developed (please see the posting by Sophie under the 5q del subject within this Forum) for our particular MDS once a patient becomes blood transfusion dependent, which has had good results, but it will be up to your particular specialist to decide when it is the right time to prescribe it as we are all different.

I am as yet, not blood transfusion dependent, and am on a 'wait and watch' regime of 4-monthly blood tests. I have however, just recently been referred to Kings Hospital London, (also a MDS Centre of Excellence) due to another problem with my blood (persistent elevated ESR) which couldn't be explained, and undergone a series of tests, but it has now been concluded that my elevated ESR is indeed connected to my MDS. So we are all a bit different, and no doubt we all have other health issues going on alongside, but the good thing is that you are now under the care of the MDS specialist team and you will receive all the care and support you will need, and that will go a long way to take the stress out of it and reassure you.

It is without doubt a life changing diagnosis, but it need not change greatly your lifestyle and you will I am sure in time, be able to live your life within the constraints that your illness imposes. It really is a case of getting over the shock of it, and then trying to get on with life. We really have all been there and can fully understand your feelings of foreboding, but we all have to put it into context. When I sat down and thought of the many many people who deal daily with debilitating conditions such as diabetes, kidney dialysis, etc, it helped me to put things into perspective, and stopped me dwelling on it so much.

The other thing I would highly recommend is to try and take some control of your wellbeing, ie: think about your diet (we are what we eat!); and walking is a really good exercise and it gets you out of the house and into the fresh air (that is, when the rain stops long enough to let us!). I make lots of home made soups, make my own bread, eat lots of fresh fruit and veg, and believe me it will give you that feeling of being back in control of your life, and this is something you could do with your wife and family and start to really enjoy. If you have not in the past thought much about what you eat, this is a good time to start. When I received my initial diagnosis, I lost my appetite for a few weeks, really right up until the time when I got the full diagnosis and I then knew what I was dealing with. Since then I have started to get on top of it, and I try to live life as normally as I can. We go away on holidays - you will need to find the right travel cover and this is also covered in this Forum - and we pretty much do all the things we did before my diagnosis. I get tired but then so does my husband and so we just have to factor that in to what we do; it is natural that we slow down as we get older and we just have to pace ourselves.

I can honestly say, that once you come to terms with your diagnosis, and you can start to see a future, your outlook will change and consequently your mood will lift and you will feel more energised. Stress and anxiety are the worst things for causing fatigue and feelings of hopelessness. Once you get on top of that, life will look very different!

Take care, and I hope your are progressing well.

Sarah Reakes
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
Sarah Reakes
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Re: Newly diagnosed-Graham

Post by Sarah Reakes » 23 May 2013 23:32

Dear Graham,

How are you?

I hope you don't mind me writing to you, but I just wanted to make you aware that Sophie, Patient Liaison has posted a request to all patients with MDS 5q- to let her have information under the topic heading 'NICE appraisal of Revlimid/Lenalidomide'. Apparently NICE are going to consider this drug on 13th June 2013 to decide whether to give the drug approval for use on the grounds of efficacy and cost. This does impact on our particular variant of MDS since it is the specific preferred drug used once a patient becomes blood transfusion dependent. Not sure if you are already on it or whether your Consultant has decided to wait, but in either event, Sophie is anxious to get as many 5q- patients responding as possible in order that she can lobby our MPs to support this drug. It took 2 years to approve Azacitidine which is another drug specifically targetted for other particular variants of MDS. She just wants to know, if a patient is or is not transfusion dependent, and the name of the patient's MP. Also you may like to make your Consultant aware of this important appraisal hearing.

I just thought I'd make you aware since you haven't posted for such a long time and so may not be aware of this important development.

Take Care.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
artistanne
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Re: Newly diagnosed-Graham

Post by artistanne » 14 Jun 2013 10:57

Hi Graham so sorry about your diagnosis. I too was diagnosed with 5q a few months ago its very scary at the beginning but once fellow sufferers start to talk to you and you get more information about it am sure you will feel less anxious.

just to let you know we are here to talk and help each other through this
regards Anne
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