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tasigna sprycel brain

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#41 LAC1223

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Posted 18 May 2016 - 09:09 AM

And yet another post I can so relate to - so much so, it took me about a minute to come up with the word relate.  I take 100mg Sprycel and have for going on 5 years, brain fog started pretty much right away and stays with me still.  Stress makes it worse and the fact that since 2012 (the year after my dx) every year I have had a new manager with new expectations, I can't seem to fight my way out.  I am about 10-12 years away from retirement, but I worry I may not make it.  The latest boss from this year said - and I quote - 'you frighten me when you say you understand what I am asking you and then deliver something that is clearly not what I asked'.  I work with Financials which was never part of my job description, but you do what you have to do - thought I was doing pretty good at it, until that comment (she used to do Financials for her business in a prior role, so I think she just wants it a certain way - I'm just not getting it).  Thus, more stress, more brain fog, more fumbles - can't find the right words... I can just see her frustration with me written all over her face.  She is really tight with our HR rep - so I'm not comfortable voicing concerns with her.  Of course, my Hematologist, well, let's just say I am going to start calling him Pollyanna. 

 

Bright side - it is kind of funny when you use the cordless phone to change channels (once your realize it of course).



#42 LAC1223

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Posted 18 May 2016 - 09:11 AM

Sorry - all caps message, didn't mean to shout at you all ;)



#43 rcase13

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Posted 18 May 2016 - 09:21 AM

Sometimes I think the brain fog is really just getting tired or fatigued earlier than we used to. I am redoing our master bath and I was re-framing the shower to accommodate the valves and shower niches. I fought with it for hours and in the end despite trying very hard the framing wasn't straight. Very frustrating for me. I was very tired. I woke up the next morning and it took me 20 minutes to make it right.

 

So for me the brain fog starts to come on strong the more fatigued and tired I get. I also can't do projects very long as I get tired and fatigued a lot quicker since I got diagnosed. I wish I understood better what causes it. I assume it is the TKI but not sure.


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!


#44 kat73

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Posted 18 May 2016 - 11:09 AM

LAC1223 - rcase13 is sure right about the role fatigue plays in brain fog.  Another thing is the fear/anxiety/worry complex.  Your mind is almost literally trying to function on two tracks at the same time: the one in front of you (your job, say) and the one that's always in the background:  CML.  Although kids seem (seem) to be able to multitask, I think the rest of us have brains that function the old-fashioned way - one "project" at a time.  Imagine you're trying to read and follow a recipe, measuring and adding ingredients, chopping things, etc all the while a small dog is ripping and tearing at your pants leg and won't let go.  I think it's very likely some eggshell gets into the batter!  That little dog is CML, which is in our thoughts (front or back) just about 24/7.


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.


#45 gerry

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Posted 18 May 2016 - 06:12 PM

I didn't get the brain fog till about three years in, I started to forget words, names, appointments. This also happened after I had reduced dosage down to 300mg Gleevec. It was actually the first side effect to disappear when I stopped the TKI. I felt my brain was actually fully functioning again, so for me it was a very real side effect. :-)

#46 surfdaisy76

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Posted 19 May 2016 - 02:37 PM

Just wanted to share...I'm coming up on one year since dx and I still have not gotten used to the stupid comments people make...Like, "You look good!" The other day someone said the worst one I've heard...

someone actually said to me, "You are so lucky you didn't get real cancer, you can just take a pill."!!!!!!

In a moment of uncharacteristic non-brain fog clarity I replied with what I thought was a great response...

I said, "True, I didn't get the death penalty, just life in prison."

 

It probably wasn't the kind thing to do but it felt good! :angry:



#47 Antilogical

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Posted 19 May 2016 - 02:50 PM

Random Thoughts....

  • I've heard that "real cancer" comment as well.
  • I also heard this one:  "Shouldn't you be cured by now?"
  • No one ever told me I looked good.  Now I'm depressed....

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#48 r06ue1

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Posted 19 May 2016 - 03:35 PM

At my diagnosis, meeting with the lead doctor at Seidman, she mentioned I would need to take a pill each day for the rest of my life, my comment was "oh, so it's not that serious".  She proceeded to set me straight on that comment.


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


#49 kat73

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Posted 19 May 2016 - 04:32 PM

Surfdaisy - Fantastic comeback.  So true!


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.


#50 gerry

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Posted 19 May 2016 - 05:19 PM

What I found funny initially was when people found out, I could see them mentally checking themselves over to see if they have any symptoms. Another thing I found was I was now an expert in leukemias and blood disorders. Had to keep telling people I could talk about CML, but anything else is beyond me. :-)

#51 rcase13

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Posted 19 May 2016 - 10:00 PM

My ONC is a research doctor. He specializes in CML. I should tell him to research a real cancer.

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!


#52 MarCap73

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Posted 20 May 2016 - 06:45 AM

"True, I didn't get the death penalty, just life in prison."

 

 

I am stealing this one.


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 


#53 LAC1223

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Posted 23 May 2016 - 11:03 AM

Surfdaisy - fantastic comeback, I've heard the same comment and it's just left me speechless.



#54 Gail's

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Posted 24 May 2016 - 01:06 PM

Kat73, love the dog ripping at pant leg analogy. So true. And perfect comeback, Surfdaisy. Another catch phrase I like from our group is normal lifespan but not a normal life. Love how our group has some great wordsmiths.
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

#55 beno

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Posted 25 May 2016 - 08:27 AM

I have only been on Sprycel for 7 weeks, but I am having major issues with concentration and memory loss.  I had hoped it was due to severe anemia and it would get better.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#56 r06ue1

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Posted 25 May 2016 - 10:41 AM

Hi Beno and welcome, 

 

I am on Gleevec so my experience may be different but I too have lots of concentration and memory issues.  I believe that the medication is just one part of it though and other parts are work related stress (lots of major projects this year and we had lots of layoffs earlier in the year which has everyone on edge) and stress from having CML.  In total, our minds are extremely busy and fatigued easily.  I haven't come up with any type of solution (yet) but once I find one I'll be sure to pass it along.


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


#57 rcase13

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Posted 26 May 2016 - 01:51 AM

Yep, I have brain fog for sure. I just got back from a five hour drive. I had to drive all the way back home and back because I brought the wrong Tasigna box. I brought the empty one.

Everyone wanted me to run to CVS.

I call it my stupid pill.

Oh and then when I got back to the hotel after 5 hours of driving I realized I set the hotel key card on the counter at home.

I dare anyone to beat this story! This can be our stupid pill story telling thread!

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!


#58 beno

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Posted 26 May 2016 - 03:46 PM

Just curious, as I am new to all this.  There are a lot of acronyms that I don't know what they mean.  Is there anywhere that has a glossary or rundown of terms and abbreviations?  I'm a curious sort and want to learn more about my illness.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#59 gerry

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Posted 26 May 2016 - 09:28 PM

Have a look here

http://treyscml.blogspot.com.au/

 

https://www.nccn.org...ancers.aspx#cml   the guideline book is here https://www.nccn.org...ml/index.html#6



#60 AdamJ

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Posted 29 May 2016 - 12:58 AM

Gerry,

Thank you for these links. I found them to be incredibly useful.

 


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU






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