Hello,
After bonmarow transplant on april 2022 on feb 2024 i found out the Myelodysplastic syndrome (MDS) has come back.
Ofcouse there is now only treatment with chemo injections for sometime to see if it will work.
I had blood transfusion twice or once in a week .
I start healthy nutrition diet n strenght exercises.
My question is at this stage is other treatments which can be help to reduce the high risk of Myelodysplastic syndrome (MDS)?
Im nervous about the treatment this time which will gone start soon.
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Hi @floorans I am so glad that you have found us, welcome, you must have been so upset.
I think your questions are perhaps best asked to your medical team that know your medical history.
Perhaps now is your opportunity to write down all your fears, questions and practicalities for your medical team.
I attach the Blood Cancer UK information on Myelodysplastic syndrome (MDS)
Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
If you are not happy then you could request a second NHS opinion. Alternatively you could, your finances permitting, get a 2nd opinion yourself, you might have an insurance yourself that covers this.
Please do let us know how you get on.
Look after yourself and please do keep posting
Hi @floorans a warm welcome to this community. I’m so sorry to hear your Myelodysplastic syndrome (MDS) has come back. Erica has given you the link to the booklet which might be helpful for you. We have this webpage which talks through treatment for Myelodysplastic syndrome (MDS) and lists some questions people might find useful to ask their treating teams when deciding on their treatment pathway - Myelodysplastic syndromes (MDS) treatment and side effects | Blood Cancer UK. We’d really encourage you to have an open discussion with your treatment team about your concerns and questions so that you feel as informed as possible.
There may be others on here who have experienced the same treatment pathway who may be able to share their experiences.
Please don’t hesitate to give us a call on 0808 2080 888 if you want to talk anything through with us, we’re here to support you however we can.
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