Emma Tilley
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6 months post transplant, a relapse and re-remission.

Emma Tilley
Posted by
09 Feb 2016

A recap of my complicated illness.

Haven't really done much blogging throughout my transplant but here goes. So back in august I had a double cord blood transplant for CML following blast formation behaving as AML in April 2015. Tests revealed I had become resistant to the drug imatinib due to a difficult mutation called T315I and was put on ponatinib leading up to the transplant. All went to plan until a case of the shingles in early december put me back in hospital. A PCR test came back whilst I was in hospital from the 100 day bone marrow sample concluding the BCR-ABL (faulty cancer gene) to be t 4% which was initially clear. I was put straight back on ponatinib and taken off my anti rejection tablets so my new cells could fight back. I there and then requested another bone marrow test. One week later the test from that bone marrow came back that I had AML blasts in the bone marrow at 15%. Of course me and my family were devistated and apart from increasing the dose of the ponatinib there was nothing more they could do.

Since then I have been on the ponatinib for 8 weeks and had another bone marrow sample taken 2 weeks ago. Despite relapsing the initial results from that bone marrow (in my consultants words) look fantastic!!! Negative for any AML!! Still hoping that my new cells might be kicking in along with the anti leukemic effect of the ponatinib. Just waiting on another test for the genes to get a better idea on whats going on. My consultant also informed me that the test for the mutation I had before my transplant (T315I) has come back negative which might also me another positive! Despite all this I am feeling generally well having overcome the transplant, feeling a lot less tired and having my appeitite back to normal. In the beginning it feels asif you are getting no where but trust me once you come off the anti rejection and start eating again, your energy will slowly improve. Since Christmas I have set myself a goal to make the most of life while i'm well. It has taken great deal of illness for me to realise that living life to the full should be the main focus in everyones lives, and not just that of cancer patients.

My hickman line of 9 months has also been taken out today YAY! Looking forward to swimming when I can :)

Nothing more I can do now but continue to take the tablets and remeber that hope is the only thing stronger than fear.