I was diagnosed with Myelodysplastic syndrome (MDS) in October 2019 i went through a series of transfusions until October 2020 and since then i have not had to have any. But nobody can explain why. Has anyone else had this happen???
Hi @Lyn68 a great big welcome.
No, I cannot help hopefully some can share their experiences.
I can tell this is very naturally worrying you
I have regular blood tests and no treatment and that is classed as ‘watch and wait’ or ‘active monitoring’, in my case long may it last.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Who have you asked on your medical team and have you had any appointments or tests since Oct 20?
I look forward to hearing more about you and what has been going on.
Look after yourself
Thank you for your reply. Yes i have regular blood tests and telephone consultations. So i guess it just watch and wait then.
That’s another question to ask @Lyn68, if so more communication would have alleviated all your anxiety.
Please let us know how you get on, if you have details of your Clinical Nurse Specialist, they are a key contact for you, if not ask to speak to your GP or consultant. Please ask everything you want to this is your time.
Look after yourself
I was diagnosed with Myelodysplastic syndrome (MDS) in March 2020, but it was complicated when it was diiscovered that I also had MPN and was eventually given the diagnosis Myelodysplastic syndrome (MDS)/MPN overlap.as it is almost impossible to find anything about this condition, I try to find out about each one. So far I have avoided a transfusion, but at the moment I an having 4 weekly face to face appointments with my haematologist and having weekly injections of Aranesp and although I am still anaemic, my blood count is improving. Have you looked on the Myelodysplastic syndrome (MDS) Patient support website? I found it very helpful. Do you take notes of your blood test results, so you can see your progress? I do hope that you get some answers, Keep in touch and very best wishes.
Dear @Lyn68, sorry for the delay in responding to your post. So from what you have said you are being monitored with no treatment? When you were diagnosed was you experiencing any other helath issues at that time like infections? There can be a spontaneous recovery in some conditions which is unusal and unexplained. Have your Haematology team given you any indication as to why this has happened? Please do get in touch if you need to talk things through How to contact Blood Cancer UK | Blood Cancer UK Take care Gemma