Hello marrow forum friends.
Well, after remission I tried to continue on the lower maintenance dose of Azacitidine, 5 weekly (instead of 4 weekly) but within a week I was back in hospital again for a week with spiking fevers and rigors - so debilitating!
My haematologist completely agreed with me that I couldn't take any more. All up I had 10 admissions to hospital while having treatment. I still have lingering pseudo gout in my left wrist which suddenly appeared during treatment and attacked both wrists and one ankle.
Having said all this, the Azacitidine did put me into remission and for that I'm very thankful.
2 months post treatment I'm doing quite well. My bloods are still low (Hb92, platelets 53 and WCC 1.2 (neuts 0.9) but they've been fairly stable. I'm struggling to put on the 5-6 kgs I lost - too thin at 45.8 kg. However I'm walking for 1/2 an hour at least every day again (unless it's windy and raining). I thank God every morning that I'm alive, and my future is in His hands.
Thank you again for your support and encouragement!!
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.