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Bone Marrow Biopsy - the truth?

I have just returned from a 6th month check with my Consultant at Ashford Hospital, Middx.

I told him that when the yearly BMB comes up, I will not be having it as weighing up the pros and cons, I felt it was far too invasive when the PCR results are just as deffinative in looking at the progress of the disease. I said I was not that interested in knowing how the chromosomes were doing if all else was ok!

He said that if you are on a trial, you are obliged to have the BMB because when they started to trial Gleevec 10 or so years ago, it was on of THE only ways of monitoring the condition and hence to monitor the long term progress of Gleevec takers, they need to keep using that test to 'tick the boxes' as it were and compare results. He did however admit to me that the more powerful PCR tests can tell what is happening to the chromosomes and are not really necessary anymore.

I'm glad I spoke up!

Obviously should I present with any contradictory symptoms i.e. anaemia and they needed to look at this in relation to the bone marrow, of course I would then agree to have the BMB. Meanwhile, I'm quite happy not to have another one - ever!

Hi,

I believe that it's a mistake for you to play doctor. If you don't agree with your doctor's treatment, then seek out another CML specialist who will treat you differently and to your liking. Remember the adage "a doctor who treats himself has a fool for a patient.'

In a recent conversation with Dr. Michael O'Dwyer on this subject he stated that it was a mistake not to do BMBs in the monitoring of CML.

If you are in a clinical trial you can ask for an exemption. If they won't grant it, then leave the trial.

Zavie

Zavie Miller (age 71)

Ottawa, Canada

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@sympatico.ca

Zavie is a old hand when it comes to CML,and always offers great advice,I myself push for extra BMBs to have the best up to date knowledge to combat CML which will kill you if ignored.

Dear Beth,

most clinicians would agree that you do not need to endure a bmb/a unless there is concern from the results of a pcr or some other indication that there is a sub-optimal response to therapy.  I know that the CML clinicians at Hammersmith use PCR to monitor patients in the long term, if  results do not 'flag up' a problem, rather than put them through the ordeal of regular biopsies. Of course clinical trials would require a bmb at various intervals just to underline the PCR results. I think you did well to ask your doctor for his honest opinion and as long as you continue to work with him/her as a self educated patient then I think you will benefit from being fully informed which in turn will enable you to make rational decisions concerning your options. Following doctors blindly is not something that anyone would advocate... if we had done that when imatinib was still in clinical trial then this forum in particular would not exist. 

Having said that, I would encourage you to continue to build on the obviously good relationship you have with your doctor and continue to ask questions and research all options. When we as patients learn as much as we possibly can about the why's and wherefore's then we stand the best chance of getting the very best of care.

Sandy

Sandy

I so resepct your comment and thank you for all you said.

I am not in any way out to 'play God' or hamper progress, just to manage my own condition as best my intuition and knowedge can.

I also wrote to The Complaints Manager at our large teaching hospital and a copy to Head of Haemotology. The comments were very valid - about treating us FIRST as people with hearts, souls and brains and not just as a walking blood count or statistic! The response was better than I could have predicted as I had replies from the Chief Exec of the Trust, apologising and making amends in a very practical way to some of my suggestions!

Again, I was never one to 'speak' up before cml, but now see it as part of being well and caring for myself and others. i have also joined a choir (similar vein!!!)

Thank you again for being there for us all!

Bx