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2 Log Increase

Hi Guys,

Some advice please I have just received my latest PCR test, my history is as follows:

DX October 2008

Baseline PCR 113.552%
January 2009 PCR 1.183%
April 2009 PCR 0.468%
July 2009 PCR 18.204%

I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3 month period.

I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error??

Am I over reacting some advice would be really helpful, has anyone seen this before.

Regards

Mark

Hi Mark,
please try not to panic as this sort of jump may well indicate an error. I know of many instances where sudden unexpected fluctuation like this have been because the sample was somehow contaminated or some other sort of technical error. PCR's are notoriously sensitive and difficult tests to perform.
I am sorry you have to endure this worry as it is such a leap from the previous result, but it is highly likely that it is an error and I do hope they can reassure you as soon as possible.

Do you mean that you are due to give a new sample next week or they have already taken a new sample for testing and you will have the results next week?
I think it is important for clinicians to understand the stress that patients experience and try to alleviate that stress urgently.

Please remind me of where you are being monitored/treated?

Sandy

Thanks Sandy,

Thank you for your speedy response. Having read your history with CML I feel a lot more comfortable with your words of advice

Even I thought surely thats wrong jumping from 0.468% - 18.024% in 3 months on 800mg of Glivec, yes I would have accepted a minor increase because I have seen fluctuations in many other PCR results but a 2 log increase!!! but it sent me straight into a panic mode.

The nurse that phoned the results through did say that it could be an error hence the retest which as I understand is normal practise.

I have been asked to go in on Monday to the Great Western Hospital in Swindon where I am under the care of Dr N Blesing on Monday morning and give a fresh set of bloods. The sample is sent of to the Hammersmith Hospital where my PCR's are done, I have been told it takes about 3 weeks to process which will be an eternity for me. They have also set me an appointment for the 28th of August to discuss the results with my Haemotologist.

Is that correct 3 weeks or can I ask them to expedite this to as you say save me having to wait 3 weeks?? Do you have a contact email so I can send you some additional info.

Thank you again Sandy

Mark

Diagnosis Oct 9th, 2008
Glivec Start Date Oct 16th, 2009
Reached Zero (CCR): Jan 9, 2009
Clinical Trial: SPIRIT
Zero Club number: 1249

Hi Mark,
I think you should ring the hospital and ask to speak with your doctor or his secretary so that you can explain how worried you are given the leap in ratio % and that 3 weeks is a very long time for you to wait for the results.
I know that they can ask for the results to be pushed through more quickly if the doctor feels there is urgency or worry.

I note you are on the SPIRIT trial. I assume this is at Hammersmith rather than Swinden? If so you should be able to ring Hammersmith and ask to speak with the trial coordinator for advice/reassurance and ask if your next test can be prioritised.
But do talk to your doctor beforehand as explain your distress. It is entirely understandable. I really do not think it is a very good idea to give non-standard pcr results over the phone without expert explanation.... especially as you are part of a trial.
Hopefully you have a contact name and number for Hammersmith if the trial is there?
Please email me if you need to.....you can contact me through the 'contact us' email which is re-directed to my personal inbox.

Best wishes,
Sandy

sorry to diverge from your topic of concern

but can anyone explain how you can have a pcr of over 100%?

I thought the PCR was a ratio of leukeamiac cells to toal cells

rob slightly confused by your numbers...

rob - http://cmlblog.spaces.live.com

Hi Rob,
I suppose that the figure given by Mark as his baseline PCR is a ratio... so that might confuse those of us that have baseline cytogenetics results given as a percentage.. thus 100% 70% etc.

The two tests are not measuring in the same way... cytogenetics measure the presence of PH+ cells by taking a sample of 'dividing cells' extracted from bone marrow aspirate and cultured in the lab... likewise FISH.

PCR measures the ratio of the abnormal protein i.e bcr/abl against normal protein i.e Abl (or some other 'housekeeping gene')and expresses that as a ratio.
So that might explain the higher figure as a ratio but given as a percentage (which strictly speaking it isn't?)

Maybe others might agree/disagree?

Sandy

thanks for the explanation :)

rob - http://cmlblog.spaces.live.com