Trey talked to you earlier about rising PCR results and eso and baso. Seen in ER now platelets ate slightly abnormal ( higher) of course. i have a BMB scheduled 12/18/15 due to my PCR increasing from 0.06 to 3.4%. I was at hospital 12/09/15 and dx with pneumonia. Of course I am a nurse and they wont let me work. 2 questions would or should I be worried about that pneumonia is it a fluke or am I heading into the accelerated phase and 2 question I am running out of PTO can they let me go due to excessive absences. thanks for all you help Trey - I really appreciate it
PCR test results
Started by
Kelly G
, Dec 10 2015 11:11 AM
4 replies to this topic
#2
Gail's
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Posted 10 December 2015 - 12:52 PM
So may be that a med change will get you back on road to numbers dropping. Not sure if you already signed up, but the govt guarantees your job for up to 12 weeks per year. Just have to contact your HR people to start FMLA.
Diagnosed 1/15/15
FISH 92%
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
FISH 92%
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
#3
hannibellemo
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Posted 10 December 2015 - 05:11 PM
What Gail says is true, Kelly, however, in our company sick leave and vacation is counted in that 12 weeks. First we have to use sick leave and then vacation (if any) and then the remaining time left of those 12 weeks is considered FMLA and is unpaid.
I have 960 hours of sick leave built up so I think I would actually run out of FMLA before I run out of sick leave. Depending on how much PTO you have, that may be true in your case, too. 
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#4
Trey
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Posted 10 December 2015 - 07:56 PM
Kelly,
Since you said your overall WBC is normal, I would not be overly concerned about a relationship between the pneumonia and the CML. More facts will be gathered from the BMB, otherwise there is not enough information. I would just wait and see what it shows.
#5
Buzzm1
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Posted 15 December 2015 - 12:21 AM
in my own case
Weakly positive .. below the validated linear range
0.0029 ratio ..log change is -3.3135
Weakly positive .. below the validated linear range
PCRU
PCRU
Weakly positive .. below the validated linear range
PCRU ever since
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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