Recently diagnosed with Myelodysplastic syndrome (MDS) at the age of 45, more by chance than because i have any symptoms. The ‘c’ word is intimidating at this stage but being 45 seems fairly uncommon for Myelodysplastic syndrome (MDS). Would be interested in any other experiences with a younger age diagnosis.
Awaiting the genetic results and seems that that will determine the real prognosis.
thanks, S
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Hi @Simonbond611 a great big welcome to our forum and yes, the ‘c’ word is scary and intimidating and I expect you are in shock as you did not have any symptoms.
Although I was 53 yrs old when I was diagnosed that was 18yrs ago, but I remember feeling in a bubble with the whole world going on around me.
I have to say that life is good today.
We are here to support you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more about you so please keep posting.
Be kind to yourself you have had a shock.
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I’m sorry you’ve had this diagnosis - an incredibly difficult time for you. I hope you’ve got a bit of support, and don’t have to wait too long for the results of the genetic tests. It’s a shocking, frightening time, getting news like this. I hope you are managing.
I unknowingly had Myelodysplastic syndrome (MDS). It wasn’t until it tipped over to acute myeloid leukaemia that I had any symptoms, other than being tired. My consultant thinks I may have had the Myelodysplastic syndrome (MDS) for up to 5 years, so I would have been 45 when it developed, in that case. Only 30% of Myelodysplastic syndrome (MDS) develops to become Acute Myeloid Leukaemia, but even if you were to be in that category (the genetic tests can give an indication) the treatment for the two conditions can sometimes be the same. Some Myelodysplastic syndrome (MDS) patients are monitored; some are on meds; and some have more intensive treatment, like chemo and a stem cell transplant - like many Acute Myeloid Leukaemia patients. Had I not developed Acute Myeloid Leukaemia, I would still have had a stem cell transplant, because of the genetic mutations I had, which indicated a greater risk of relapse.
Anyway, I’m now 2O happy months post transplant; I’m full of beans and bounce; I’m returning to work full time shortly, and I’ve never felt better - so I hope that encourages you. This IS survivable. Life can be brilliant after treatment. The younger and healthier you are, the better your outlook - so your age is a real plus. You can do this.
Please let us know how you get on, and if you have any questions, please just ask.
Thinking of you during the awful wait for more results and how your team plan to get you better.
All the best.
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Hi @Fullofbeans I can’t thank you enough for taking the time to reply with such a full and encouraging response.
All new ground at the moment and its clearly a different story for everyone but its still good to hear other peoples experiences.
Will remain positive!
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Hi @Erica. Thanks very much for the welcome and taking the time to reply.
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Hi @Simonbond611. I can see that the forum members have already began to share their experiences and that must be so useful.
I still find it difficult to say the C word 5 years on and remember the words clearly at diagnosis so I know how you are feeling.
Please let us know how you go when you get all your results.
I’m glad you found us 
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Hi @Simonbond611 sorry to hear your news. I was a relatively young diagnosee when they told me I had Myeloma at age 49. The typical age for Myeloma is about 70 so when I presented with symptoms they didn’t take it seriously and just told me I had back pain and needed to get up and do some physio and stop being lazy. In reality I had a vertebral fracture and was incapable of anything of the sort. I’d never heard of Myeloma and it didn’t register for a few days that it was actually a cancer. Nobody really sat down and talked me through and told me what to expect so in the end I had to do my own research. I hope they are kinder to you and that you’ve got lots of support around you at your difficult time.
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Dear @Simonbond611
Thank you for posting and joining our forum, I hope you find it and safe, supportive space. You must be in some shock having had no symptoms and being diagnosed with Myelodysplastic syndrome (MDS)? As you pointed out, you are young to be diagnosed with Myelodysplastic syndrome (MDS) but please know there are many treatment pathways to be considered. You Haematology team will be able to give you more detailed information regarding your risk stratification once all genetic testing is complete then a plan can be made.
I am sure you have been given information regarding your diagnosis but I wanted to forward you our new diagnosis information I've just been told I have blood cancer | Blood Cancer UK and the current information we hold on Myelodysplastic syndrome (MDS) Myelodysplastic syndromes (MDS) - what is it, symptoms and treatment | Blood Cancer UK. Both webpages also have really useful booklets that you can download and/or order.
Please do call us if you would like to talk and do keep in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hello Simon. I am a lot older than you, but wanted to give you hope. I did not know I had Myelodysplastic syndrome (MDS), but randomly found out from a blood test that I had low neutrophils (no symptoms). This went on for 7 years until at the age of 60 I started to suffer from breathlessness up hills and had a cough for 2weeks (never normally ill). Thankfully my GP was keen to get blood tests and I was diagnosed with Acute Myeloid Leukaemia. Over 3 years later I am now fit and well after chemo and a stem cell transplant. I still won’t use the C word and if asked I tell people I had leukemia
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Hi @LindaSellar great that you have been able to share your experiences, that is what our forum is all about, welcome to you.
Blood tests are wonderful things for diagnosis and monitoring purposes aren’t they.
I was also the healthiest person ever for my first half century.
It sounds as if you have a good caring GP there.
Isn’t the ‘C’ word scary and when I was diagnosed it wasn’t actually used, the word ‘leukaemia’ was certainly scary enough for me !!!
I look forward to hearing more about you and what you are getting up to.
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Hi @LindaSellar and welcome to the forum. It’s so good to hear your story and it will give hope and positivity to others. I hope all is well with you and look forward to hearing more about you x
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I haven’t seen that you’ve received your detailed chromosome and mutation results yet. I’m hoping that they are benign but in case they are not and in case a stem cell transplant is a treatment option for you, here are some links to an Myelodysplastic syndrome (MDS) UK recent Zoom session with 2 renowned experts in stem cell transplantation from King’s.
Here are the links, one You Tube and one the Myelodysplastic syndrome (MDS) UK website-a charity which specifically supports people with Myelodysplastic syndrome (MDS) and Chronic myelomonocytic leukaemia (CMML):
You Tube: https://youtu.be/ozcjk-XI5zs
Myelodysplastic syndrome (MDS) UK website: https://mdspatientsupport.org.uk/stem-cell-transplantation-a-recorded-zoom-session-with-mds-uk-patients-and-specialists-from-kings-hospital/
As @Fullofbeans says, being diagnosed at a younger than usual age is of concern but you have the advantage of that should it come to a stem cell transplant!
Myelodysplastic syndrome (MDS) has such a broad spectrum of seriousness and many clinicians therefore are loath to use the blood cancer terminology to patients who have low-risk types, preferring to call them myeloid neoplasms instead!! Whilst clinicians and others debate the semantics, the key issue is to find out exactly where your diagnosis lies in the spectrum and only then can you and your clinicians begin to find out what your treatment (or not!) options are.
Please keep us updated.
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Thank you to all of those who have taken time to reply, it really is appreciated, whether it is your experience or you sharing knowledge and links. @GemmaBloodCancerUK @Nichola75 @LindaSellar @Franko @ChrissyD
Since my first message, I’ve gone from fearing that I only had a few years left to being comfortable that it can be cured and to understanding that the prognosis in my situation is that whilst I am classed as low to very low risk in terms of Acute Myeloid Leukaemia itself, I do still have declining platelet counts which could in the relatively near future mean that I need the transplant anyway (which in my head sounds like both paths lead to a similar place).
My chromosomes etc appear fine, but still waiting on the remaining genetic tests. Also then expecting to see a specialist to discuss potential routes.
I’m not sure how many people with Myelodysplastic syndrome (MDS) are experiencing declining platelets but mine appear to have dropped 10 each time i’ve had a blood test and currently at 46… the next test is in 10 days, so we will see where they go from there (i’m led to believe <10 it becomes an issue).
Thanks for reading and all the best.
Simon
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Hi @Simonbond611. It’s great to hear from you and get an update. It’s great to hear how far you have come from your first appointment. I think that fear at the initial stage of diagnosis is immense. Sometimes it just takes time
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Great to hear that your situation is sounding less frightening, @Simonbond611. Sorry that it does lead you to a transplant - they’re time consuming and can knock you for six - BUT the medics really know what they’re doing on that front, and they can potentially sort your issue out completely. I was in a similar position - it was likely to be a transplant for me whether I had developed Acute Myeloid Leukaemia or not. That kind of made me feel better about it all. And one consultant said the transplant was the Gold Standard treatment and I was lucky to wangle one (!) Hmmm, I wasn’t sure about that, but in retrospect, I can now completely agree.
Best of luck with it all.
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Gosh @Simonbond611 you certainly have come a long way in your thinking, it took me a lot longer.
Look after yourself and please keep us updated
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Trying to stay positive until we know more really… I’m well aware that it could turn out to be more negative than i’m currently hoping it is, but time is precious (3 children) so I won’t dwell on it any more than I have to for now. My wife has been great but we know from her diagnosis of MS 12 year ago that sometimes things aren’t as bleak as they first seem. It can go the other way of course.
Thanks again!
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Hi @Simonbond611 sorry to hear of your diagnosis. Not what you would expect at 45 but unfortunately life has a way of testing us all ! I was 42 when i got my Myelodysplastic syndrome (MDS) 5q- diagnosis. Deemed v low risk at the time. I found out purely by chance. I used to visit my doctor once a yr for a blood test as a little health check. So i basically I knew i had a blood cancer b4 i had any symptoms and was told to go off home as there was no treatment I needed. A hard one to get your head around. Our children were 7 and 12 at the time. My wonderful consultant told me the people who do best with Myelodysplastic syndrome (MDS) are the ones who can put it in a locked box in the back of their heads and only take it out when needed! Easier said than done though!
Its 5 years later for me now. For 3 years i was on a wonderful drug called revlimid which kept my bloods really good and meant i could live life to the full working, full of energy and going off on hols till covid hit!
It stopped working for me in Aug 2021 and i am now 54 days post transplant. Im doing well. The transplant hasnt been easy but no one sails through it and you just have to accept 1. How lucky you are to be even offered one and 2. Normal life does have to stop for that time but isnt it worth that to have the chance to get your future.
Anyhow dont want to be bombarding you niether! A plan is what you need and you will get that once you know exactly what you’re looking at. As others have said there are people living with Myelodysplastic syndrome (MDS) for years and require no treatment or are on some amazing drugs which keep them well.
There is plenty of support out there for you too. This board is brilliant and i also found the Myelodysplastic syndrome (MDS) UK patient support fb excellent too.
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Hi @Ashob thanks so much for taking the time to reply, very interesting to hear of someone else in their 40s finding out by chance and how soon things changed. Good to hear you are doing well.
Wonder if i could ask a few questions which you absolutely dont have to answer.
- what was it about your bloods that led to your initial diagnosis? Mine appears to be declining platelets
- What changed in 2021 for you to start heading towards a transplant?
- 54 days post transplant, wondered how that has been for you and how long youve had to be out of action completely during that time?
All the best, no obligation to reply.
Thanks again
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Absolutely no problem @Simonbond611 you ask away any qs. The thing you will learn about Myelodysplastic syndrome (MDS) is there are so many different types and even within those types other factors can change as time goes on so it is impossible to predict even for the docs what exactly your Myelodysplastic syndrome (MDS) will play out as.
Utterly heartbreaking would you believe Simon is even though Myelodysplastic syndrome (MDS) is normally a disease which effects mainly men in their 70’s is that children can have it also have it 
Ok so answers to your questions:
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Mine was my haemoglobin was slightly under the guides. They thought initially i had a B12 deficiency but ruled that out and told me i needed to see a haematologist. Appt letter came in post with Oncology Haematologist on it and I nearly collapsed!
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That wonder drug I had been on for 3 yrs stopped working and my blood counts all dropped that month. I did know from the start though that i would end up needing a transplant at some stage. They look at your siblings first. I have only 1 sister. She was tested (blood test) but wasnt a match. Then they go into the donor bank. All I know is my donor was some wonderful lady out there. In 2 yrs time i can sent a request for her details and if she were to agree we can be put in touch. I really hope I can do that some day. It was no walk in the park for her to donate her cells so i would love to be able to say thank you.
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I worked full time up to 2 weeks before the transplant. I have told work i needed 6 months off. They have been so good to me. My husband kept his holidays and his company have been great too. The avr time a patient is in hospital for is 35 days but you come home weak and your energy levels are low so you really need someone there to mind you for a while! Docs have said lack of energy can take a year to come back but you do feel slightly stonger as weeks go on.
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