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I copied your posts to this Transfusion folder - to answer you in full.
It is important you get a transfusion if you need it.
Haematologists do say it is adviseable to try to keep your Hb levels around 9 or 10 (or 90 or 100 with the revised measurements).
You will feel better for it and your energy level will increase.
Do indeed discuss this at your next visit at King's.
They will look into what has changed and what can be done to keep you transfusion free if possible.
As mentioned - if you have the 5q- type of MDS - and need transfusions - you may then be a candidate for the drug lenalidomide/Revlimid - which will be appraised in June.
Do give me a call or email me if you'd like to talk this through in detail.
From Christina - 15/05/2013 and 19/05/2013
"Hi Sophie my Hb went down to 7.6 last week even though I am on 500 cg of Darbepoietin weekly so am going to have a transfusion at the end of the month in Worthing, would rather not have it but feeling tired, hopefully on my next visit to Kings next month this will be discussed, regards Christina"
"Hi I am on Darbepoientin and although on 500 mcg weekly my Hb is 8.5 and I worry that if this goes below 8 I may need a transfusion, this I do not want to happen, i don't want to be transfusion dependant. Christina Fowler"
For any queries:
Call 0207 733 7558
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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