I've been worried. my last labs showed my neutrophils were half of what they were two weeks ago. Could this be a sign of resistance to my TKI's(Tasigna) I have only been on treatment for about 7 weeks now. I hate feeling so clueless about all of this! They want me to wait two weeks before I do labs again, but the waiting is becoming my anxiety trigger. Should I be worried??
nuetraphils cut in half since last labs? Sign of resistance?
Started by
Frogiegirl
, Dec 17 2013 10:41 PM
11 replies to this topic
#1
Frogiegirl
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Posted 17 December 2013 - 10:41 PM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#2
chriskuo
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Posted 18 December 2013 - 02:51 AM
What is your WBC? Are your neutrophils in range?
#3
scuba
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Posted 18 December 2013 - 04:02 AM
Since you are newly diagnosed - read this first:
Many of your questions, Trey has already answered. If not - you can post here and I am sure Trey will respond. He is expert in CML - better than many of the doctor's who practice CML oncology.
Your Neutrophils dropping is a sign of Tasigna doing its job. If you had resistance, the opposite would be happening. It would be necessary to know your other blood counts as Chris asked in order to know where you are.
The goal of the treatment is to get your blood counts back to normal and to reduce the CML disease burden to near zero. TKI's are powerful - they can cause myelosuppression (and often do), which mainly is your Neutrophils falling below normal. We don't want this - so watching your response at this early stage is very important. Write back what your labs show and you can get more information on what they mean.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#4
Frogiegirl
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Posted 18 December 2013 - 09:40 AM
My WBC was 3.2 and the hemotology girl that called me to go over my results said my neutrophils had dropped from 2200 to 1400. Not even sure what that means??? I know she said if I planned on getting a flu shot to do it now because it may not do any good with the neutrophils so low? I really hate when they talk to you like you KNOW what they are talking about I will learn much more as I go, but being a newby stinks!
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#5
Trey
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Posted 18 December 2013 - 10:08 AM
Generally you want to see the neutrophils go lower since they are the main problem in CML. So resistance is not an issue for your results. But your neutrophils are now a bit low. This is what most of us experience early on. So all signs point to the TKI drug doing its job well.
#6
scuba
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Posted 18 December 2013 - 10:22 AM
Your Neutrophils are below normal (normal > 1700 < 7700 ~), but not by much. At this early stage of your treatment it is important that you monitor your WBC's, Platelets and especially Neutrophils once every two weeks, preferably once every week to gauge response. Neutrophils > 1000 to 1700 is low, but effective at fighting bacterial disease. Neutrophils <1000 but greater than 500 put you at higher risk for infection, but manageable. Neutrophils < 500 put you at high risk for infection and efforts to increase Neutrophils must begin (usually by not taking the drug). Neutrophils below 200 is considered dangerous. (My own Neutrophil count actually went below 200 when I was in the early stage of treatment. Nothing happened to me, but the 'fear' was there). This process usually resolves itself after six months or so for many.
I suspect you are proceeding normally and will likely (vast majority of patients) bottom out in your counts (above 1000 for Neutrophils), rebound some as your bone marrow heals and become a long term CML'er like the rest of us. Just stay vigilant in this early phase.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#7
rct
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Posted 18 December 2013 - 10:33 AM
My Mrs has been sub-500 for a very long time now.
Your anc isn't too bad, and it is close to 50% of your WBC, so that is fine.
Get your flu shot whenever, do it as though a normal person.
The trick with anc and chronic neutropenia is that the number on the test can mean absolutely nothing, as in my Mrs case, or absolutely everything, as in people that catch every thing there is to catch and it is blamed on low anc or an out of balance anc to WBC.
It is a weird world to inhabit, and I hope yours get to a thousand and stay there. For now, be vigilant, but be hopeful not fearful. Most of the time this stuff turns around. I wish we could say the same for my Mrs, but we can't, it continues on.
rct
#8
scuba
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Posted 18 December 2013 - 10:37 AM
Here is a good summary of Blood count ranges. You can compare yours to these charts:
http://www.mercynort...c-normal-ranges
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#9
scuba
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Posted 18 December 2013 - 10:37 AM
RCT - If I recall, your 'Mrs' is also PCRU - correct?
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#10
rct
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Posted 18 December 2013 - 11:31 AM
Yes, as of this summer, still PCRU. That will probably change next month, she has changed doctors and has been at 300/day Gleevec, any time she has cut back or stopped it hasn't taken long to rise. We expect PCRU to move up, we expected at least a small change up in ANC this month, but it went down.
rct
#11
hannibellemo
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Posted 18 December 2013 - 12:44 PM
Wow, that is from my hospital website. Did I post those at some point or did you find that on-line?
Pat
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>
#12
LivingWellWithCML
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Posted 18 December 2013 - 09:11 PM
I think it is fine as well. My neutrophils dropped that low over the first couple of months, but then they gradually rose a bit with my WBC. And I didn't even catch a cold during that period of time. 
. Watching the wacky numbers caused me a lot of (unneeded) anxiety too! Hang in there...it just takes some time for your body to recover and establish a "new normal"...
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
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