Hello, my mom (74) was recently diagnosed with intermediate risk Myelodysplastic syndrome (MDS). Research says she has 3 yrs avg survival rate. I’d like to know if there is anyone who has the same diagnosis but has lived longer? We are very worried and it has affected our family dynamics - lots of arguing and heartache rather than coming together and helping mom with her new reality. It’s doom and gloom for us and hoping to have a glimmer of hope.
Thank you, Geraldine
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@Geraldine Hi and like many of us here, sorry life has sent you here.
It sounds like everyone is trying to find solid ground after the shock of your mum’s diagnoses. You mention everyone, but how is your mum coping with the news?
As for the medical side of this condition, this site has a treasure trove of information, such as:
But also there will be lots of others personal journey’s recorded on the forum, just have a root through and no doubt someone with personal experience will share any info they can.
If you need a more medical and personal source of help and support, here is all the contact methods to reach @BloodCancerUK-SupportTeam
I hope you find some answers, but as a friend once said to me years ago after their parent had a short life prognosis, “You can fit a lot of living and loving into a few years”.
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Good Morning @Geraldine,
I’m very sorry to hear about your mums diagnosis. I hope you are doing okay today? I’m so pleased you have reached out as many others affected by Myelodysplastic syndrome (MDS) are often active on the forum and will hopefully be able to offer you some really great support.
I can understand why the family dynamics will be resulting in more stress right now. Reading information online about any type of blood cancer can cause so much confusion and can often be really terrifying for families. As much as online information & research can have it’s purpose it can also never predict an individuals prognosis.
The way Myelodysplastic syndrome (MDS) develops over time varies a lot from person to person as there can be many varying factors when looking at prognosis. You can read more about this here.
I wonder if your mum has been able to have a direct conversation with her haematology team at all in order to discuss her prognosis?
We appreciate how confronting this can be and it doesn’t always feel appropriate. However if you want to know more about her outlook, the healthcare team are best placed to talk things through with you & your family so you can all have an evidenced based understanding about mum rather than more generic information.
Should you prefer to talk things through with us Geraldine, please never hesitate to contact our helpline on 0808 2080 888.
Take good care, Lauran
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Hi @Geraldine a great big welcome to our forum I am so glad that you have found us and already had 2 great responses
I have another blood cancer, but I read on line when I was diagnosed that I had a 5-10 yr prognosis, Here I am 20 yrs later and I am now 74yrs old
I don’t want to repeat the other responses, but I have found it is so difficult within a family dynamics who are all trying to deal with the shock of a family diagnosis in their own way. In my experience everyone will be dealing differently, there is no right or wrong way.
How does your mum feel about it all, she is the most important person here and family disputes is not what she would want or need.
Perhaps it might be worth you and she writing down all the questions she wants to for her next appointment and perhaps she should be pleasantly assertive and ask all her fears, questions and practicalities.
Perhaps it is a time for you, you cannot control others, to work with your mum and listen to what she wants and needs.
Please do keep posting on our family forum, it is the one place where I know others will understand and I can say how it really is for me.
Be kind to and look after yourself and mum.
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Hi clickinhistory, thanks so much for taking the time to reply. Your question asking about how mom is honestly was an eye opener for me. It seems we were all focusing on what we all wanted. We haven’t really focused on what mom wants. Thank you for the important reminder. Makes me approach this life changing event in a different way.
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Hi Erica, thank you for sharing your own experience and reminding me I cannot control others but only my relationship with mom. There’s definitely a lot of things that can be done in that area. I appreciate your taking the time to reply and the thoughtful response. I’ve been thinking about your reply and how I should change my behavior.
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Hi Lauren, thanks so much for the comforting reply. I have read through the resources you sent and the way things are thoughtfully written is very reassuring. I have shared the links with mom. I hope it gives her hope as well. Your website has been the best resource I have found on the internet. Thank you so much! I appreciate your time replying to me and sharing your knowledge.
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@Geraldine
Hy.
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) last May at the age of 72. Chronic myelomonocytic leukaemia (CMML) has some similarities with Myelodysplastic syndrome (MDS) but prognosis is worse. I do have high risk of mutations. At diagnosis I had 10 abnormalities in my blood count including neutropenia, thrombocytopenia. I totally changed my diet, included massive amounts of fruit , veg, fish, nuts, some spices , Vit D and Vit C. I researched every food on the planet. Basically my diet has every vitamin, mineral and antioxidant available.
My blood count at Christmas I had 4 abnormalities in my blood count. The only supplement I use is vitd and vit c. I am on watch and wait. As I was recieving no treatment I thought give it everything I could. Of course it’s sensible to debate changes with the medics but I am going in the right direction. THIS MAY BE A TOTAL COINCIDENCE AND VERY SHORT TERM.
MY ONLY TARGET IS TO SLOW PROGRESSION AND HAVE EXTRA TIME. Don’t give up. Erika in particular dragged me out of depression and made me realise that all is not lost. Hope your mother and yourselves quickly get over the awful shock and push on for many years.
Very best wishes
Unclejack.
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Hi Unclejack, thanks so much for taking the time to reply and sharing your own situation. Glad to know there is a lot that can be done by the patient while my mom is also at wait and see phase. I pray that your situation continues to improve including my mom’s. Thanks for sharing.
Geraldine
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Hi Geraldine, iam feeling your pain and im struggling also.
my gorgeous dad was diagnosed yesterday, and our world has fell apart…he is 76, fit and healthy and is now sat in a ward in clatterbridge feeling fine!!!
he has been diagnosed with Acute myeloid leukaemia (AML), no cure only time.
he has been told 3 months…and i have hit a wall.
here if you need a chat or a moan, going through it all also
nicola x
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Oh, @NickyD I expect you are struggling, it is a lot to take in and such a shock.
Perhaps just make the most of every day with your gorgeous dad and we are here as a place for you to say how it really is for you.
Be very kind to yourself