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Profile picture for roughanne @roughanne

@hipsu5 hi Just read your account of the bone marrow biopsy and thought I’d share my experience I was recently diagnosed with ET with the gene mutation CALR and I was on on hydrea 500 daily which incidentally I had a lot of side effects so now I’m on it three days Mon Wed and Friday to see if I can tolerate it and two weeks before Christmas I was sent for a bone marrow biopsy which I see from you that I had it taken by the old method which was very unpleasant to say the least after taking the bone marrow sample the doctor announced he had now to take a sample of the bone which was very painful and to compound matters he said he didn’t get enough and had to do it again so it was a very unpleasant experience and also since then I have had severe pain from my hip all down my leg and am waiting for an mri to see if they damaged a nerve, I got the result of the biopsy at the weekend and it’s showed I have grade 1 scarring ( there are 3 grades grade 3 being acute leukaemia) said not to be worried as they will keep an eye on it but obviously if it progresses I will be in trouble, has anyone else got scarring and what is the eventual outcome, still trying to get my head around all this so any info gratefully received

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Replies to "@hipsu5 hi Just read your account of the bone marrow biopsy and thought I’d share my..."

@roughanne

I am so sorry to hear about your terrible ordeal with the bone marrow biopsy.

And I am so sorry about your result. I don't know what it means, but of course you're going to worry when you don't know what's going on.

I hope you will hear soon from someone who can shed light on your situation.

Please be kind to yourself at this difficult time.