Latest update is my WBC count was elevated at my last CBC. Doc was waiting on BCR-ABL result - said something about if the results were off, taking me off Sprycel for another med, but he just had his nurse call me to go in again for more blood work and asked me if I had stopped taking my Sprycel to try to heal my lips. When I asked for the results of the BCR-ABL she said they weren't there. Guess I'm kind of worried now. No one to talk to, so I am sharing with you all yet again - thanks for just being here to listen to my venting. I am sure it will be nothing, but now I sit here waiting for the scheduler to call me back to setup 'the perfect' time for me to come in. I just want to go in and get it over with - work will have to wait.
WBC Elevated, Waiting on BCR-ABL results and just got called to come in for BloodworkWBC Elevated
Posted 21 October 2015 - 11:00 AM
Waiting is so, so hard. Your mind just zooms to the worst. The doctors and nurses are so busy with everyone else, they just can't stop to consider how we are impacted when they don't get RIGHT back to us. Did the WBC go above normal limits?
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.
Posted 21 October 2015 - 11:04 AM
I try and take comfort from slow moving medical professionals. It's when they hurry and you're rushed to the head of the line that I worry.
Posted 21 October 2015 - 12:40 PM
Ugh, I know how hard it is to wait. These tests are tough sometimes. I have my next test in a week and I always feel anxious. But do consider that WBC can be elevated for many reasons and most are not CML related. There's also a difference between "elevated" and "high." Do you know what your count was?
Elevated usually means just slightly above normal. So if your oncologist was asking about Sprycel, he may only be doing so because he's being cautious. He knows that you have CML and he doesn't have PCR results yet. It's also likely that if it was someone who did not have CML he'd probably be talking about any number of "normal" causes such as cold, flu, viruses, infections, etc.
Blood testing is also prone to lab and processing errors as well. Several on this site have reported this. So the first thing they'll want to do is repeat the test to see if the results are consistent. That's probably why they ordered the second test. It's the smart move.
Best of luck to you and try to keep positive. Don't assume anything. I am sure all is good.
Posted 21 October 2015 - 06:22 PM
Slightly elevated usually doesn't mean anything is going on with the CML. If WBC is over 15 I might start to wonder, and over 18 I would start to be concerned.
Posted 21 October 2015 - 07:25 PM
I have to agree with Anti-Matters. Whenever my doc has "serious," concerns, the office calls saying, "We want to see you later today or tomorrow." Waiting and not knowing still sucks...
Posted 22 October 2015 - 01:24 PM
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
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