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No Cessation of Gleevic for my Daughter

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#1 SandyG353


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Posted 12 December 2017 - 04:14 PM

This is to let you know the outcome of the test by Dr. Druker of my daughter's blood.  He tested her blood and found that her number was .0055 which he felt affirms good control of CML.   Her last PCR was noted at .01 in May of 2017. ( Prior to that the results were 000 for 7 years, but my daughter didn't forward the blood results for all those years.). Dr. Druker felt that her PCR is borderline as to whether he would be comfortable stopping the Gleevec as his preference is having an additional zero in front of a number.  She was told that his lab is quite sensitive at detecting very low values down to .002 and beyond that is considered undetectable.   Dr. Druker feels that it would be worth repeating the test at OSHU in a few months to see if she has a low-level fluctuation and if by chance this value was just at the high end.  
Added to the report is that is not uncommon for patients to have low level fluctuations, and in essence , it is meaningless- some patients vacillate between undetected to .005 to .o5and back down to undetected.

Dr. Druker left the choice to her which is to repeat the test or opting to discontinue with close monitoring of PCR's every 4-6 weeks for the 1st 6 months, then every 6-8 weeks for an additional 6 months until reaching 1 year mark of treatment, then monitoring PCRs evert 3 months thereafter.  Added was 50% of patients typically progress off treatment.  If this occurs, he recommends resuming treatment when PCR>0.1

So, my daughter decided to repeat the blood work in 3 months and wait until the numbers are lower.  Like I said she failed to send all of her results which changed after 7 years when the lab was changed.  The first result was .05. then it went lower, next was 000 and the May 2017 was .01

What a wonderful doctor who took the time to have her receive a kit and have the New Jersey Oncologist draw the blood which she Fed Ex'd to Dr. Druker.  She will continue to send the blood samples to him.

She is a bit disappointed in the results, but it is best that he looked at the blood in his lab before she attempted to stop the drug with the New Jersey Oncologist.  She may have lost response in a short time.

#2 kat73


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Posted 13 December 2017 - 12:34 PM

Such an interesting update - thanks, Sandy!  I think your daughter is on a good road.  Isn't Dr. Druker amazing?  How does he have time to interact like this with "stranger" patients?  He emailed me back really promptly recently, with a thorough answer to my question, totally clued in with my particular situation.  He's the best.

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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