Dem Bones Dem Bones Dem Dry Bones

Last night I was very excited at the thought of going back to Hammersmith Hospital today to pick up my new rat-pellets to start on ARIAD. So why am I sitting here writing this blog instead of sitting at the hospital downing my drugs…      

To qualify for the ARIAD phase 2 trial I have to pass certain criteria. Now, I have always found passing tests to be relatively easy, so as you can imagine having NO control over my CML results can be quite frustrating to say the least, (especially when you are constantly failing CML class).

The main qualifying criteria for ARIAD is to have failed at least two out of three current TKI treatments – Imatinib, Dasatinib or Nilotinib. BINGO! I have finally passed something (ironically by failing twice!) I have failed Imatinib and Dasatinib so I qualify right? Well yes, nearly…

You need a bone marrow biopsy result to confirm this and show that you still have a good number of leukemic cells. The result is also used as a baseline to monitor your progress throughout the trial.

Last weeks bone marrow biopsy = FAIL!

My biopsy result has come back as ‘inconclusive’ not because I don’t have leukemic cells, but because they couldn’t get any bone marrow out of my bones to get any result at all. AKA my bone marrow is as dry as a popcorn fart.

Initially, ‘MOST’ CML patients have BMBs (bone marrow biopsies) every three months until they are shown to be responding well to a drug and then increasingly, BMBs fade away into the distance and are replaced with PCR blood tests, which are more accurate as the levels of bad cells reduce. For me, I have consistently been having biopsies every three months since my diagnosis a year and a half ago.

Biopsies have become a thing of dread for me. For all you non CMLers, if you’re interested to see a biopsy CLICK HERE there are loads on YouTube. For everyone else, I won’t make you relive the experience; you all know how it feels.

Six times I have some confident cocky trainee trying to poke around in my hips and get to my ever-so-scarce and valuable marrow without anything other than a local anaesthetic.  My gorgeous mum holds my hand and looks on with dread (she is scared of blood and needles) as they poke around in my hip looking for the amber nectar. As time has progressed, my marrow has become as endangered as the Madagascan Aye-aye. Ever seen one of those? Nope, nor have I.

Generally my biopsies follow the same routine – the local anaesthetic goes in, I yelp and ask for more anaesthetic, they administer another anaesthetic shot for luck (I am very persuasive), the marrow needle goes in, they poke around, they panic, look at my mum, whisper, poke around some more, wipe some blood on some slides, realise they have no marrow, cautiously ask if they can go in again, I whimper… (go to the top and repeat x 5), then we give up.

Not so confident or cocky now are you Dr. Trainee…? As I hobble out the room I mostly mutter under my breath, “I wish I could say it had been a pleasure…” and “I hope we don’t meet again too soon”.

So there it is, I was sitting on the sofa last night when I got a call from Prof. Jane Apperley (I love Jane, I quite literally owe her my life. Love you too Mum!) telling me we have another ‘inconclusive’ BMB result and it would be a wasted trip popping by to pick up my drugs tomorrow as I can’t start them yet until we get a result. The plan of action is to wait a week, stay off my Dasatinib and try again on the left side of my hip – we usually go to the right. If that doesn’t work, don’t worry she says, there is always the sternum to try after that . . . (I REALLY hope going left side works!) I will then have to wait another week for results, so I have no hope of starting the trial for another fortnight.

I am frustrated to say the least.

In the meantime I am going to enjoy a drug-free couple of weeks, a rare treat. I am out on the town Saturday – at least I won’t have a TKI hangover on top of a self-induced hangover.

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