5 replies to this topic

[cleocans]

Hey all, I haven't posted in awhile.   I had my 1.5 year appointment last week.  It sure feels like I've had CML for longer than a year and a half though!  My onc told me my Oct. test my PCR went from undetectable to 0.005.  When I picked up my results in October it said not detected, weird.  She is not to worried unless my new test goes up again.  So now the worrying has set in again.  I didn't think much about my CML after I was undetectable, which was really nice!  I''m trying not to worry but sometimes that doesn't work.

Kim

[Marnie]

Hey, Kim. . .I was in the very same situation.  I was undetectible, then bounced out.  The following test was again undetectible.  I'll get my next test results on Tuesday, and I'm hoping that they have remained at zero.  As long as you don't have an upward trend with 3 consecutive tests, you don't need to worry (easier said than done).  .005 is virtually the same as .000.

Marnie

[CallMeLucky]

I was in same boat.  Had it happen 2 times.  Was undetectable then went barely detectable, next PCR was negative then following one jumped up a little more right around where you are.  The following one after that was negative and have continued to be.

Hang in there I know how unsettling it is but the PCR test can jump up and down at low levels.

[Vandyfan]

Kim, I received a call today from the nurse practitioner with my oncologist.    I had two quarters with detectable results after having gone a year detection-free and two years after being diagnosed.  Had a bone marrow biopsy the first week of this month;  now they want me in the office next week for a change of medication.  Fatigue has been getting worse, though I'm not sure that is related at all.

This is turning into an adventure.  Seems about 18 percent of us who start out on Gleevec find resistance within the first three years.  Fortunately, we have several good options available, two of which have been approved within the last six months.

[Sneezy12]

What are all of your recent bcr/abl values? Regards, Frank

[cleocans]

I just got my latest test results back yesterday.  It was 0.004 so it went down from the uptick of 0.005.  I am thinking my undetectable may have been a fluke.  I had a lab change once I think they may have been the undetectable one, I will have to check my records.  But my insurance asked the cancer center to go back to my original lab.  Which were the last two results.  So I am not worried.  Will so how things go in April!

Vandy, I am on 100mg of Sprycel.

Kim