Hi.
Ive recentlly been diagnosed with Myelodysplastic syndrome (MDS) at the age of 42. This was, and still is a shock, as the only symptoms was getting out of breath quicker and a bit tired. It wasnt till i got a bone marrow biopsy that i had some sort of clue as to whats going on with me. Ive been scared, i am scared and been told that a stem cell donation/ transplant is the treatment that we are going for, just waiting on my siblings and my dads blood results to see if they are going to be a match.
Just wondering if there any stories of people having successful stem cell transplants and or people that are going through the same diagnosos of Myelodysplastic syndrome (MDS).
Thanks in advance.
Hi @Alan-duffy I am so glad that you have found us, your story is not the same of yours, but what I really remember the tiredness, everything was just too much.
I was diagnosed 18 yrs ago but those feelings and thoughts of being so scared came whizzing back to me.
I was giving my diagnosis by a gynaecologist, so it was a complete shock.
I came home and wrote my will and funeral music.
I was diagnosed at 53 yrs old and my 70th birthday (just before Covid times) was my best ever.
The Blood Cancer UK website has some useful information on it and if you would like to talk to someone the Blood Cancer UK support line is there for you too.
Now is your opportunity to write down all the questions that you might like at your next appointment, your fears and practicalities etc.
Personally I would say just give yourself time, really look after yourself and be very kind to yourself and your feeling are so normal.
Hi @Alan-duffy. I was 42 too when i was diagnosed with Myelodysplastic syndrome (MDS). Mine was v low risk and called 5q-. I had no symptoms just got a blood test as a routine health check and was referred to a haematologist which led to BMB’s and 8 months later a diagnosis.
So long story short, I had 5 good years on different treatments until i got to the point where there was no option but to have transplant. My wonderful donor came from the bank as my sister was not a match.
I am currently 17 weeks post transplant and doing well. I still have a long road ahead but im feeling well.
I know its such a shocking diagnosis but there are many different types of Myelodysplastic syndrome (MDS). When you find out which one you have then you will get a plan and clearer idea of whats ahead.
If you have an qs you think i could help with please juat shout.
Welcome to the forum, Alan - although I’m so sorry you’ve had to seek us out. But this is a great place for info and support, and there are lots of people here who have been through similar.
I know from personal experience that a diagnosis of Myelodysplastic syndrome (MDS) is really scary, and that it sends your mind in all sorts of worrying directions. And then that mention of a stem cell transplant - well, that ramps up the fear no end.
I was diagnosed with Myelodysplastic syndrome (MDS) in Aug 2020 at the age of 50, and actually a few days later, they told me it had tipped over into Acute Myeloid Leukaemia. The Stem cell transplant had already been mentioned for the Myelodysplastic syndrome (MDS), so my treatment plan didn’t change when we found out I had leukaemia.
Anyway, I’m still here! I had 2 rounds of chemo and went into remission on the 1st round, and then I had a Stem cell transplant (in Jan '21) with cells donated by my lovely brother. Personally, I found the treatment to be quite rough, but some people have a better time of it - it just depends on how your body reacts to the chemo, and what sort of infections you get during the process. But the treatment worked; I recovered from the side effects; I’m back to my normal self, and life has returned pretty much to normal with work and social activities and family life etc. The only difference is that I have this not exactly fun experience tucked under my belt, and it does change you - although for me, I think they’re mostly positive changes.
But as you will see from the replies you get, it can be a treatable condition and many people make good recoveries. You’re young, which is an advantage, and you’re not too poorly, which clearly is a good sign. And you’re here! If you need support along the way, we’re here for you. Any questions or worries, just get in touch.
Hi @Fullofbeans. Thank you so much for taking the time to get back to me. I appreciate that. Im so glad your doing well and life has returned back to normal for you.
Ive not long just finished 7 days of chemo which is 2 injections everyday in the stomach, this is to stop it becoming Acute Myeloid Leukaemia until i get the stem cell transplant.
I feel a bit better now speaking to people like yourself that have gone through this journey, i know there’s a lot to take in, so im sure i will use this forum from now on.
Thanks again.
Hi @Ashob
Thank you so much for taking the time to get back to me. I appreciate that. Im so glad your doing well after 17 weeks post transplant.
Ive not long just finished 7 days of chemo which is 2 injections everyday in the stomach, this is to stop it becoming Acute Myeloid Leukaemia until i get the stem cell transplant.
It feels good to know people like yourself who are on their journey and doing great. I felt alone but this page has lifted me a bit, so ill be back on here.
Thanks again.
No problem @Alan-duffy. The best support I got apart from my husband was from talking to other Myelodysplastic syndrome (MDS) patients. This forum is great. There is also an Myelodysplastic syndrome (MDS) UK facebook page which is great too.
Is that Aza injections you are having? I had them too for 8 months prior to my transplant.
I know it doesnt feel like it now Alan but we are actually incredibly lucky to be offered a transplant as we are young and otherwise healthy. Unfortunately not everyone gets that chance.
Wishing you the very best now and you know how to get support on here now so just shout!
Thank you so much for taking the time to post and for sharing your experiences with us. It’s so understandable for you to be feeling shocked and scared at this time, Alan, and you are certainly not alone in this. I can see that the community has been welcoming you with open arms and sharing their experiences- this is indeed a safe space for you. I just wanted to say that our Support Team are here for you- would you find it helpful to talk things through with one of us? Please don’t hesitate to call us on 0808 2080 888 if so (or you can email us if that’s preferable for you- support@bloodcancer.org.uk).
Hi Alan…must be a tough time at present so a few crumbs of comfort for you.
You will get the best care possible now and although all of us dread being told such a shocking diagnosis in many ways its the start of getting better.
I have ET which is a little less complicated than your illness but i collapsed and had blood transfusions before finding out what illness i had.
So for you now its a scary time but in time you will look back and realise that this was an important step…
All the best and never be scared to ask questions on here however daft they may sound…the people on here will help.
I was 44 when diagnosed with Acute Myeloid Leukaemia with Myelodysplastic syndrome (MDS). I’m now 14 months post transplant and living a normal life. I feel that good, I’m training for a 312km bike race in Mallorca next April.
My friend who is in his 70’s was diagnosed with Myelodysplastic syndrome (MDS) at the same time as me and he his 17 post transplant. We both went through treatment together.
The treatment and recovery were difficult but worth it in the end. One think always say to people who are having treatment is everyone is different and the treatment will affect you in different ways.
Hi @Leefer
Thank you for your comments.
This forum ive noticed is a great place where people come together and share their experiences. This has provided me with some sort of comfort, rather relying on Dr Google.
I hope you are doing well.
Alan
Hi @TanyaBloodCancerUK
Thanks so much and i appreciate your kind words. Ive only been on here a few days but this community is amazing, and i dont feel as alone on this journey anymore.
Keep up the good work, your doing great things. Im sure ill be in touch again.
Alan
Hi Alan,
I was diagnosed with Myelodysplastic syndrome (MDS) and Leukaemia in July 2020. I am now 2 years post transplant and have just returned from a five day holiday in New York to celebrate this milestone. I won’t pretend treatment was easy, but stay focused and take each day as it comes. Sending you a big hug
Thanks for taking the time to reply, I hope you enjoyed your well deserved break to New York celebrating your milestone. I will take on your advice, thanks again.
Alan
Hi Alan, I sympathise with the shock. I got my diagnosis of Acute Myeloid Leukaemia out of the blue from a routine blood test. In retrospect I’d been getting a bit more breathless than usual but was still walking 5 miles a day.
Anyway, the good news is that there is life after stem cell transplant, and I’m 10y older than you. I had an unrelated donor transplant in Feb 2020, so heading up towards 3y now. The transplant was straightforward and I was well prepared. I did end up in hospital for four months completely well but flat neutropenic from my preparatory chemo, and went direct to the transplant unit from there. I was only in the transplant unit for 18 days and went home just before lockdown! At the time lockdown was a blessing in avoiding risks of infection, but it has got rather tedious to still be shielding as my immune recovery has been slow. I got the dreaded skin Graft-versus-host-disease but it has now been banished for the past nine months. I would say that I am now even fitter than I was before, walking a couple of hours a day and enjoying my family although not yet socialising more widely for fear of Covid. I think that not all transplant units are equal from what I’ve read here and on the Anthony Nolan fora - get as much information as you can so that you are well prepared. Good luck!
Hi @diana
Thank-you for the response and sharing your experiences with me. Thats great you feel fitter than ever and enjoying your time with the family. As for socialising, i dont blame you with COVID doing the rounds again. Youve done amazing to get to where you are now. You mention you got breathless more, im breathless all the time just now which, has put a halt on my walks as i also experience heart palpitations, the Dr says this is normal, Does the breathlessness go away post transplant?
Alan