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Sal- Rob's pcr

"could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR."
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hi sal,
3.7% is regarded by hh doctors as PH+...
anything below 1.5% is regarded as complete cytogenetic response.... 3 longs below that is reagrded as major molecular response... etc.
if you click on the video link under essential reading heading (right hand of this page) you will be able to watch goldman expain this.
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"....have been trying unsuccessfully to get referalto Dr Smith for last 12 months.
Spoke to 1 of the drs at the conference who said There was evidence of failure to respond and he should definitely be refered on from our local hospital. We are always fobbed off..."
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i would say that you should contact dr. smith yourself and ask for an appt. explain the situation.....then insist that your local hospital contact him and send rob's notes.
you will have to REFUSE to be fobbed off.. and even make a fuss, hard to do i know but there is no alternative in this sort of situation.
there is absolutely no reason why you should not get a referral.

sandy

Thanks Sandy,Will have to have another go, unfortunately it is complicated by the fact that I want to be proactive and Rob is happy to let things go on as they are. He's a very laid back sort of bloke, wheras I want to get things sorted, but he's the patient so i guess I have to let him deal with things his way. Appreciate your advice though
Sal

hi sal,
well this is a difficult situation for you.... having to watch/advise as opposed to act/be proactive is hard and i am sure a lot of the 'carers' on this site will understand only too well how this feels.

the only thing i can say about being 'laid back' is that it may be the way rob copes with his diagnosis... however, the advice that rob got from one of the uk's cml expert clinicians at the patient seminar should really encourage him to get, at the very least, a second opinion and assesment of his current response to glivec.
best wishes to you both,
sandy