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Confused!

I've just come back from yet another bone marrow biopsy, my 3rd and I was only diagnosed on the 3rd August 10, and I asked why I was having so many when I know from speaking to others that no one else at other hospitals seem to have them as often as me.

He didn't really have an answer just that it was this hospitals policy but it also came out that my BRC-ABL levels have never been checked and won't be till I reach cytogenetic remission, is this normal? The bloke that does the biopsy is a senior registrar or something and said I will have to wait till I see my hematologist in Feb to get any questions answered.

Also my last BMB in November was never sent off for any sort of testing, it was forgotten.

I have been told I'm in major hematological remission but other than that how would they know how I'm doing if the BRC-ABL levels have not been checked. It's all still a bit like another language to me and I do find it all confusing!

I'm starting to think I should change hospitals to a Centre of excellence if only to avoid the 3 monthly BMB'S lol

I believe the ones nearest to me are Manchester and Birmingham (I'm nr Derby) has anyone any experience of these hospitals and how do I go about changing?

Thanks

Jackie

Hi Jackie... that is a lot of biopsies to suffer! Just to confirm, given that you have not yet shown any cytogenetic response as yet as you mention that you are in major HR rather than complete HR you will want to reach CHR (complete haematological Remission) first and foremost. Then you will be tested (by blood test rather than bmb) regularly to see if you have a lowering of the PH chromosome + cells in your marrow... and when you get down to around 1.5% - 1 % PH+ (from 100%) then you will be said to have a Complete Cytogenetic Response (CCyR). At that point it is normal to test your bcr/abl levels by pcr as the PH + cells will not be visible.... so the protein that signals their presence is tested for instead. 

I hope this helps a little? 

I would suggest that you ask for a referral to either Birmingham Queen Elizabeths or Manchester - either one depending on which is most convenient. QE is pretty good and Prof. Charles Craddock and team are at the forefront of CML therapies.

Sandy

Hi there,im under dr lucas at manchester,its a fantastic hospital and hes a great doctor.x

Hi Jackie,

This was normal procedure in the early days. They would do BMBs until you reached CCR and then move on to the PCR test.

3 BMBs would be normal. One at diagnosis and then one every 3 months.

One suggestion I have is to make sure that you get a copy of each of your test results. This would have alerted you to the missed analysis. These reports are very easy to read, especially when you are comparing them.

Even if you do change hospitals, make sure that they send you the reports.

Good luck,

Zavie