Thank you for being here I have been searching for a support group. I’m 66 was diagnosed in Oct. have 7q damage to mention o few. My dr wants to start me on chemo pill 1/18 and I’ll be meeting with a transplant team. This diagnosis is so frightening and grime. I feel like I’m losing my life by tiny drips. I’m always searching for like stories to give hope. The drs here are keen on giving survival rates. Makes everything worse. I’m very active but feel quite depressed about this of course.
Thank you for hearing
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Good evening @Nanatoo and a big welcome to the forum. I’m really glad you have found us as you will find the forum family invaluable throughout your journey.
Can I ask (sorry if I missed this), what is your diagnosis?
The initial diagnosis is so tough and you are still so early on in your journey. You must have so many thoughts and feelings running around your mind - which change from minute to minute, hour to hour.
The support line may be a good place for you to start (0808 2080 888). Off course we are all here to support you but I found talking things through really useful as well. The number is there, if or when you need it.
Your feelings are completely valid. Just be kind to yourself - it’s a big shock for you 
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My diagnosis is Myelodysplastic syndrome with multilineage dysplasia. I’m hoping I qualify to try Stem cell transplant. The chemo I’m being offered is decitabine + cedazuridine.
I’m so anxious I almost hate to read anything about it.
Thank you for your help
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I can imagine! I used Google far too much when I got diagnosed but now only use reputable websites such as this one.
Have you got a good medical team who you can be honest with and ask the questions you want to?
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Hi @Nanatoo
I’m so sorry you’ve been diagnosed with Myelodysplastic syndrome (MDS). It is really scary, isn’t it? You’re plunged into a new world overnight of new diseases and terms and thoughts about the future - it tips your whole world upside down instantly, and for quite a while.
If it helps to know this, I was diagnosed with Myelodysplastic syndrome (MDS) at 50, and then a few days later the diagnosis became acute myeloid leukaemia. But I had chemo and a stem cell transplant, and here I am one month shy of 2 years post-transplant, and I’m in excellent health and my life is pretty much back to normal. Myelodysplastic syndrome (MDS) can be treated. And very successfully too. I should not put too much store into the stats. I was told they’re often out of date or refer to tiny sample groups etc, and so don’t necessarily reflect the current picture and newest treatments. And everyone is an individual with their own unique factors coming into play too.
I believe there is an Myelodysplastic syndrome (MDS) support group on Facebook, which might be helpful, and there are plenty of other people here, who will hopefully see your post.
It’s of course natural to feel really down after such a diagnosis, but my advice would be to keep being as active as you can, because that will stand you in good stead for the treatment, and will help with good mental health. And talk to as many of us as you can. There can be life after an Myelodysplastic syndrome (MDS) diagnosis, and a healthy life too.
All the very best to you.
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Thank you all so much. I’m feeling more hopeful and am hoping a Stem cell transplant will reverse some of these gremlins in my bone marrow now.
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I do and they’re very honest with me. Sometimes they’re so familiar with the disease and the end game they forget they’re talking to someone who’s fearing for their life.
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Dear Nanatoo
So sorry to hear of your Myelodysplastic syndrome (MDS) diagnosis and embarking on treatment. You might like to watch this video clip about stem cell transplant. The speaker is Dr Victoria Potter who is one of the top transplant specialists and is from Kings College Hospital. There is an information part and then some patients talking about their experiences. I hope you find it helpful.
Myelodysplastic syndrome (MDS) UK is a charity which specifically supports people with Myelodysplastic syndrome (MDS).
Best wishes
Chrissy
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Hi @Nanatoo, a warm welcome to our forum community. Thank you for taking the time to share your experience, and I’m sorry to hear how you’ve been feeling since your diagnosis. This is very understandable, and you’re certainly not alone in this. If you’d find it helpful to talk things through, you’d be very welcome to call our Support Team on 0808 2080 888. We can also talk you through avenues for accessing further support for yourself, if this is useful, or indeed just provide a listening space for you.
I can understand if you’re feeling too anxious to read about your condition right now. We do have information and booklets should you feel like you wish to read a bit, but there is no pressure.
Do take care of yourself and remember we are here for you.
Best wishes,
Tanya.
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Hi @Nanatoo I am so glad that you have found us.
I was diagnosed at 53yrs with another blood cancer 19 yrs ago and I am still here and very happy with my life.
I see things quite visually and when I was first diagnosed I can remember wanting to sort of pull the blood cancer out of me.
It is so natural to feel depressed, demotivated, grim and frightened, you must still be in shock, I think of it as a bomb shell.
For me one of the scary bits was I suddenly entered this parallel universe that spoke this confusing medical language.
Others have given you brilliant responses on here, there is lots of reliable information on the Blood Cancer UK website and if you would like to talk to someone the Blood Cancer UK support line is there for you.
You say you are very active so perhaps fresh air and reasonable exercise is an idea.
If you usually exercise indoors then brilliant.
I believe in a balanced healthy diet with the odd treat.
The main thing is that you look after yourself and please keep posting as you are part of our forum family now
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I have been thinking about you @Nanatoo and I wondered how you are doing?
Take lots of care of yourself
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Thank you so very much. I’m starting to get my head around what’s happening. My dr is doing a donor search for a stem cell transplant. I hate thinking about all this but it is what’s happening. I have been exercising as much possible to keep my body and mind as healthy as possible. Praying for us all. Thank you again
Mary
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I’m trying to get back in to my exercise. It really does help me to feel better doesn’t it - both physically and mentally
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Exercise does certainly help. I’m still praying for a good donor to show up.
Best to all. Thank you for checking. It means so much
Mary
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I have everything crossed for you 
waiting must be hard.
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I really agree with you about exercise @Nanatoo. I think the word exercise is often daunting, but it is a very individual thing and it has to be appropriate to the persons health and capabilities.
I have heard of 2 different people whose goals were to get to the front gate, then to the first lamppost along the street, then to the next etc, etc.
When I was first diagnosed I decided to walk along the towpath at my half hour lunchtimes.
It frightened me that I could not even reach the towpath at first, in the end I was late back after an hours lunch one day, I had got carried away.
When I started Pilates classes I dreaded being asked to get up off the floor, I now take intermediate classes.
Daily walking sets me up for the day, it clears my head, solves some problems, gives me different perspectives and generally improves my mental and physical health.
Fingers and toes crossed for your donor tp show up
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