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Questioning your Onc.

I noticed a slight increase in my white blood cell count. It had risen from 5.3 to 7.9. No problem there.

5 days later, it so happened that I had another test. The WBC count was 12.0. My onc wanted another test in 2 weeks.

14 days later it had risen to 14.1. He checked for inflammation markers and found none. He decided that things might be going awry and I should have a BMB to check Ph+ level.

I felt better than I had for some time and observed that he needed one more point on the curve to determine the trend. The rise rate was low and reducing. If the source of any inflammation had gone and the WBC count had peaked before the last reading and was now falling, he couldn’t tell. He is a very nice guy, and thought about it and agreed. Another test would be done in 14 days, but if the WBC count was up by even the slightest amount, I should have a BMB.

14 days later the WBC count had fallen to 8.5 and the BMB was put back to normal schedule.

By looking at the data with a non-medical eye, I saved myself an unnecessary BMB (although even if the WBC count had risen, my basic premise would still have been correct).

I guess the moral is, don’t be afraid to question a judgement by your Onc, even if he has your confidence.

John

I've just received a letter from Hammersmith telling me that at the time of the first blood test above, my RT-PCR was 0.037%.

By my arithmetic, that's a 3.4 log reduction after 9 months.

Sounds good to me.

John

Dear John,

Congratulations on your good results. Anything below 0.05% at Hammersmith is considered to be safe from relapse. Congratulations for reaching this milestone in Gleevec therapy and in a very short time, too.

Regarding the rise in WBC, many patients have posted in the support groups about rise in WBC and some of these rises were correlated to infections. Our doctor always does a PCR rather than a BMB to check things out as this can be done from the blood and no need to go through a biopsy. If the PCR is on a rising trend, then he does a BMB to check things out.

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

Hi John, many congratulations on your great response.... and also on your level headedness regarding the 'rise' in your white count.
i am also treated at HH and find that the doctors there welcome patients who are not afraid to ask questions.

best wishes,
Sandy

Thank you Sandy and Anjana. This was actually my local (North Hampshire Hosp.) doctor, but I am very pleased that I am also being monitored at Hammersmith. I had not realised the PCR was being done, so this was a very nice surprise for me.

John