A support group for anyone affected by leukaemia to come together, share experiences...
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I don't know if I can use my real name so I'll not risk being kicked out on my first day! I was diagnosed with MDS in 2015, around the same time as I was having back pains which became more severe and I'm now a wheelchair user. Previously I was diagnosed with haemochromatosis and B12 deficiency so it's fair to say that my blood's a mess! Anyway, I'm injecting myself weekly with Aranesp which is keeping my red blood cells around the 100-110 mark, with the occasional dip below 100. Can you please help me with a prognosis? I've not had any luck with the medical community at the hospital. I have the suspicion that there's not a lot of knowledge as it's a rare disease, along with the haemochromatosis. Have you much experience with my area of illnesses? There's no group in the Macmillan fraternity it seems.
I'll leave it with you and hope that you can help me.
I've got involved greatly with the Move More event and I'm enjoying the social side although it's difficult to encourage some to stay after the group work ( I forget the phrase!!! So annoying.) and there's been a meeting of all with groups on a mountain top which was great as I met others from around the country. Well, I hope to hear from you soon.
Do what makes you happy, don't give in.
There are no hard and fast rules about what you call yourself, some are quite imaginative! You are very welcome and may find patients with MDS on the leukaemia group page.
I currently work within a regional unit and see quite a lot of MDS patients so you can ask me anything.
Prognosis for MDS varies as much as the disease itself. I cannot give you an answer about your prognosis without having access to your medical notes as it depends on a number of factors such as your haemoglobin, age and bone marrow results. I will try however and arm you with some information that you can help you at your next appointment to get answers.
When a patient is diagnosed a number of factors are used to work out prognosis. Haemoglobin, White cells, platelet levels, age and results from your bone marrow biopsy are used to work out prognosis and decide on treatment. This is known as an IPSS score. This score may also help decide the risk of your MDS progressing to acute leukaemia.
Ask your team if they have worked out this score and ask them to explain the results to you. You may have not had a bone marrow at diagnosis because your consultant felt it wasn't needed. I suspect that you may be in the low risk category given the treatment that you are on and the time since diagnosis .
It is worth mentioning that your score can change if your blood count drastically change but this does not seem to have happened to you. MDS UK are fantastic for information about the latest research, drugs and general tips but if you have any more questions about this or anything else, please come back to me.
Caroline - Macmillan Information Nurse Specialist
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
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