Janemcs
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Disappointing biopsy results

Janemcs
Posted by
16 Dec 2015

The expensive GCLAC chemotherapy didn't work

Today I was given the news that I didn't want to hear, and in fact it was worse than I could have expected. Not only has the last cycle of chemotherapy not helped reduce the residual disease in my bone marrow, it has actually got worse. My MRD count has actually gone up.

This is bad. This is very very bad. In fact this is unprecedented. Until now, I have been following a tried and tested treatment protocol for AML which has proved successful time and time again. But not for me. So now, my consultant is having to improvise, to come up with something new, something radical, and more significantly something not approved for standard NHS funding as part of standard treatment for someone with my condition. 

So now I wait, while he applies for funding approval for a new drug called Midostaurin which has shown promising results in a trial undertaken by haematologists the US. I need to go back in to hospital as soon as/if funding is granted. That means a second Christmas in a row in hospital. 

The hardest thing was telling my daughters, but they took it so much better than expected. I'm not sure they've fully realised what it means.

Comments

17.12.2015

Hi Jane, 

I am so sorry to hear the GCLAC chemotherapy hasn't been successful. I can't imagine how you must be feeling, particuarly so close to Christmas.

Have you read all the comments on Facebook that stemmed from your last blog? Everyone was so lovely and supportive, and I hope their thoughts and advice are helping you through this difficult time. 

I hope funding for the Midostaurin comes through quickly, so that you are able to get  started - even if it does mean sadly spending Christmas in hospital.  I am glad your daughters took this news well.  How old are they?  

Your blogs are excellent Jane, so honest and open and I am sure they are mirroring the experiences of many others in our community, so thank you again for publishing them here. If there is anything at all we can do, if you want to offload your feelings, or discuss anything while you're waiting for your results, please do get in touch with our Patient Experience team.  

Take care of yourself, 

Kate

06.01.2016

Jane,

I am so, so sorry to hear that the GCLAC chemotherapy was unsuccessful and have everything crossed that 2016 brings you a much needed change in luck starting with funding being granted for the Midostaurin so that you can get back on track as soon as possible with the original move towards transplant.

As Kate says we're all rooting for you and are here to help in any way that we possibly can as are the wider blood cancer community on Facebook and beyond. Do stay in touch and fingers crossed that 2016 is the year that you finally show this horrible disease who is boss! Andy