Thursday, 26 May 2016

Well THAT'S annoying!

Back in January, six years after treatment, my regular checkup showed that my neutrophils had dipped below the magic number that is deemed 'normal'. Like all of the numbers that come out of a full blood test they go up and down over time but they should stay within the bounds of normal. 

My neutrophil count has gone up and down but the trend has been downward for a while. Slowly, very slowly downward. So, back in January, having gone below the normal line a full test was run on my blood sample. 

The test looks at every cell in the sample essentially hunting for the hairy ones and after a nail biting week of waiting for the result: All Was Clear.

But just to be sure my regular six monthly check was moved to a four monthly one. That check was today and once again those pesky neutrophils have dropped in number. Two 'red' results in a row means time for more tests. 

Although there's no evidence of disease in the blood it may be in the marrow. So that's where we're going to have a look. There's also no external evidence of spleen growth but we're going to have a look inside there too. 

Oh joy, a bone marrow biopsy and a CT scan are now in the diary for next month.

Even though its the result I expected, even though I knew it might come back one day, I still had a little hope that life would defy my own expectations and I'd eek out a longer remission.

I'm not symptomatic: I don't get ill when the rest of the family do; I run 40k most weeks; there are no night sweats; and I'm not losing weight. If it is back then it's in its very early stages and I'm hoping that my levels of fitness will help me through what ever comes next.

Its still annoying though and I expect a rollercoaster of emotions for all over the next month or so. I'm sorry to say, for a while at least, this blog might see some renewed action. 


  1. Hi Rich - just are you doing? Did the BMB reveal and MRD or HCL?

  2. Hi Eric, i should probably have blogged the result but never seem to find the time.

    The BMB showed a slight infiltration of HCL. 0.9% in fact. So technically my remission is over.

    That said its a very low infiltration and there is nothing present in the blood, which there was when i was first diagnosed and treated.

    I'm now having slightly more frequent blood tests and check ups. The intent is to treat again with Cladribine if i get highly symptomatic or get to more than 5% bone marrow infiltration.

    How quickly I'll go from 0.9 to 5.0 is hard to tell. It is possible that, because analysis is now much more accurate than it was six years ago that I've always had 0.9% and it just wasn't detected. There is however a slow decline over the last few years of my white cells so it's likely that its just coming back very slowly.

    The CT scan i was due to have turned into an ultrasound, which is much easier, but still allowed them to have a look at my spleen, kidneys, liver, basically everything. All was normal, including spleen size, so I'm not symptomatic internally right now either.


    1. We have similar 6 month BMB showed less than 1%...I was very happy with the result considering i was at 90% when diagnosed. I decided not to do Rituximab as I am feeling good and wanted to keep that option in my back pocket. So glad to hear you are doing well. Would love to chat with you at some point in the future.