Hi there. My friend linked me in with this forum, I’ve found it a great source.
I’m a very healthy 45 year old man with a young family and have just been told I have a low risk Myelodysplastic syndrome (MDS). 3 genetic mutations with normal chromosomes. The only treatment option appears to be Bone marrow transplant and they tell me it’s a 15%risk, which is scary in itself. My Hb is low but holding so I’m on EPO, my other cells and blasts are OK so far…
I’m getting through the blow of the diagnosis but am just wondering has anyone come across any research/trials/emerging areas internationally where there are working on targeting these genetic mutations?
The other thing that is bothering me a lot is when I will get the Bone marrow transplant, nobody seems to know, which is hard to deal with in itself.
Anyway, my family and I are getting though the blow and utilising all the cancer supports so we’ll keep fighting.
Thank you for any experience on the matters above you may have.
Paul
Hi @paulstass I am so glad that your friend has linked you to our forum, welcome.
It sounds to me that your family and friend are there to support you.
Perhaps you are all processing the shock of your diagnosis in different ways, there is no right or wrong way.
I found that I was in shock for a long while and it sounds to me that you are now talking medical speak, it is really so much to take in.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
I attach the Blood Cancer UK website details on Myelodysplastic syndrome (MDS) Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
The Blood Cancer UK support line is there for you on 0808 2080 888.
I have found that the emotional rollercoaster hit me hard.
All those thoughts and feelings going around and the ‘what if’s’ etc.
My experience is there is a lot of waiting around etc to come well.
Look after and be kind to yourselves and please do keep posting, I look forward to hearing more about you.
Hello @paulstass,
I am so pleased you have found us and equally pleased you are finding it helpful. I am very sorry to hear of your diagnosis. Should you also wish to talk things through with us our helpline is always here for you- 0808 2080 888.
Your question around when you are likely to require a bone marrow transplant is a really important one. Your haematology team should be able to offer you some guidance around when & if you are likely to require a transplant Paul. They will be able to guide you on both timelines if this is something they are planning and reassure you as to what comes next.
To help with your question around research, i also wanted to let you know about our clinical trials support service team. Initially you can contact them and have a telephone call to ask any questions you have but also to understand more around what clinical trails might mean for you- How our Clinical Trials Support Service can help you | Blood Cancer UK.
Again Paul should you wish to talk through anything at all- we are only ever a phone call away.