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Why is it when WBC is in normal range I get this little blip of anxiety?


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#1 hannibellemo

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Posted 03 February 2016 - 11:45 AM

It happens every time...

 

I'm so used to my WBC being low normal or in the higher level of below normal that it never fails to give me a little shiver of anxiety when it goes higher into the normal range.

 

Yesterday everything on my CBC and Metabolic panels were smack dab normal except RBC, Hemoglobin, Hematocrit and MPV (nothing new here) except my WBC was 6.52 and ANS was 3.0! For anyone else (at least those of us without CML) this would be business as usual and a good thing. I think this the highest it's been in the 6 years after dx since my CML was under control.

 

Anyone else feel this way - admit it I can't be the only one this happens to, can I?   :huh:


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>


#2 r06ue1

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Posted 03 February 2016 - 02:09 PM

If it were over 12 then I'd be concerned; you're fine, its just our CML anxiety playing tricks on you.  I still check my abdomen (spleen area) every once in a while to make sure it hasn't grown any.  ;)


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#3 Trey

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Posted 03 February 2016 - 02:10 PM

This happens more often in winter.  You live in Iowa.  Hello?



#4 hannibellemo

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Posted 03 February 2016 - 03:58 PM

Can't hear you, Trey, I have a snowball in my ear!


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>


#5 hannibellemo

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Posted 03 February 2016 - 04:01 PM

R06u1;

 

I used to do that too, I'd no sooner leave the doc's, who had just checked my spleen, and I feel a twinge on my left side on the way out of the building.  I was immediately convinced my spleen was enlarging; blowing up like a balloon right then and there.  :D

 

Haven't had CML anxiety in a long while. Took me by surprise!


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>


#6 MarCap73

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Posted 03 February 2016 - 06:21 PM

I am relatively new to my CML dx and everything right now is giving me bits of anxiety!  I get an ache or pain and can't help but wonder if it's related, or a side effect, or whatever.   I fear becoming a hypochondriac!  :unsure:  ;)


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 


#7 scuba

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Posted 03 February 2016 - 06:39 PM

Pat - you just had both the lead -up and voting at the Iowa Presidential caucus  ..... it's normal for your body to increase immune response against what your eyes and ears have no doubt been seeing and hearing non-stop from the politicians seeking to run the country.

 

No worries - you're WBC's and ANC is just increasing to protect you and will return to normal now that they are gone. No doubt this has been happening to Iowans every 4 years!

 

Enjoy the snow. 


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"


#8 rcase13

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Posted 03 February 2016 - 08:51 PM

Trey for president. There I said it.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#9 gerry

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Posted 03 February 2016 - 10:49 PM

It happens every time...

 

I'm so used to my WBC being low normal or in the higher level of below normal that it never fails to give me a little shiver of anxiety when it goes higher into the normal range.

 

Yesterday everything on my CBC and Metabolic panels were smack dab normal except RBC, Hemoglobin, Hematocrit and MPV (nothing new here) except my WBC was 6.52 and ANS was 3.0! For anyone else (at least those of us without CML) this would be business as usual and a good thing. I think this the highest it's been in the 6 years after dx since my CML was under control.

 

Anyone else feel this way - admit it I can't be the only one this happens to, can I?   :huh:

 

I was looking through the web and it said if you had elevated basophils at diagnosis you were in  trouble, had to remind myself I had reach PRCU. :lol:



#10 kat73

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Posted 04 February 2016 - 12:10 AM

Pat - Yes.  Same thing here.  I breathe in and out and remember once when my oncologist looked me in the eye and said, "Normal. Means. Normal.


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.


#11 soundoff

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Posted 04 February 2016 - 12:39 AM

Better than being on low normal side...

#12 mlk210

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Posted 04 February 2016 - 10:58 AM

Yes Pat. It just happened to me a few months ago. My WBC was up to 7 and I'm usually in the 4's. I immediately thought something was wrong. Then I got a PE and had to go off the medicine 2 months later. 3 weeks without any Sprycel and my WBC was 4.3, go figure! I struggle the most with the anxiety when it comes to this disease.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#13 Melanie

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Posted 04 February 2016 - 11:05 AM

Pat, I had to laugh at your post because it describes exactly what I feel with every lab. Haven't reached that "normal" result yet, but I'm sure I'll feel something is terribly wrong. Ha,ha! Due to some difficulties, I was having weekly labs for years, then just two months ago, I finally was able to go to once a month. At first I was so excited about not having to get the labs done, giving my veins a rest, using that time for something fun...then I started to stress about the "what ifs". A month is a very long time. So anxious waiting for those results and in the end they were no worse or better. This month, I've enjoyed the freedom, but now starting to get a little worried about next week's labs. You would think it's a PCR test or BMB result, I'm going to be waiting for! All those years of weekly labs spoiled me into a confidence that if anything was wrong, I would catch it in time. Now I need to find the same confidence in the monthly labs. I think I would flip out if my numbers went into normal range...even though normal is normal.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#14 hannibellemo

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Posted 04 February 2016 - 01:06 PM

mbrown2010,

 

I had to laugh when I read your post! I remember when I went from weekly testing to monthly testing. I lasted about two weeks and called the oncs office to see if I could come in for a CBC. They laughed and said, "Sure, come on in!" They let me know later I wasn't the first person to have ever done that.

 

I just knew my WBCs were going through the roof, though!

 

mlk210 said it best, it's the anxiety the gets us, for me, even more than side effects.

 

Scuba, I'm so glad to see the backs of the politicians and the media! My phone hasn't rung since Tuesday. New Hampshire you have my sympathy!

 

Thanks everyone for the posts. It surprised me after so many years that a little thing out of the usual made me sit up and take notice!


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>


#15 Buzzm1

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Posted 04 February 2016 - 06:39 PM

 WBC was 6.52 

 

my last 8 quarterly WBC's

8.0 8.3 9.4 10.9 10.7 10.6 10.1 9.1

the trend's my friend ... for the last two years I've had discomforting pressure on my left side (stomach and bottom of rib cage) ... two ultrasounds haven't resulted in any determination ... in the meantime I worry about the other shoe dropping before I reach Gleevec cessation ... 


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.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#16 Trey

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Posted 04 February 2016 - 07:40 PM

Buzz,

Had a colonoscopy?



#17 Buzzm1

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Posted 04 February 2016 - 07:51 PM

Had a colonoscopy a year ago ... everything was AOK

 

Meals accentuate the discomfort ,,. my PCP suggested gas although I haven't had a noticeable problem.  


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.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#18 Gail's

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Posted 04 February 2016 - 10:59 PM

So do you think anxiety raise WBCs? Up to 8 last month from my normal 5 or 6 and I changed jobs and started divorce proceedings. Not a mellow month. I feel good and live in temperate Portland Oregon
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

#19 rcase13

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Posted 05 February 2016 - 12:41 AM

I am 15 months since diagnoses and if I lean over or do heavy physical exertion my spleen will hurt for a few days. The OnC thinks my spleen is bruised or there is scar tissue and the ribs pressing on it irritate it.

I also think anxiety can cause any number of issues. I'm still not so sure it didn't cause my CML. So an increase in WBC? Who knows maybe. My OnC would probably say no. But hey what does he know! It's not like he has tons of education and countless hours of research! I trust my fellow compatriots here first!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!





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