I love knowing all of you are out there...makes me feel sooooooo much better knowing there are others like me inhabiting the planet!!!!!! 
brain fog and forgetfulness
Started by
tazdad08
, Jan 12 2016 09:14 AM
45 replies to this topic
#41
surfdaisy76
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Posted 01 August 2016 - 03:05 PM
#42
winespritzer
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Posted 01 August 2016 - 08:32 PM
Holy cow,
That's me also. Energy in the morning and then fog and fatigue set in. All my Drs. say my symptoms are from the sprycel....the endo, cardio, pulmo, gyno, and gastro....even an urgent care Dr.
Isn't that amazing? But not the onc...
But I do feel energized after a bout at the Y.
Be well, everyone,
Winespritzer
That's me also. Energy in the morning and then fog and fatigue set in. All my Drs. say my symptoms are from the sprycel....the endo, cardio, pulmo, gyno, and gastro....even an urgent care Dr.
Isn't that amazing? But not the onc...
But I do feel energized after a bout at the Y.
Be well, everyone,
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
#43
beno
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Posted 04 August 2016 - 12:31 PM
I find mental work to be more taxing than physical work now. Concentrating on anything just wears me out.
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
#44
tazdad08
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Posted 04 August 2016 - 04:11 PM
A reduced dose has helped me somewhat... not eliminated the fog, but did decrease it. It is still odd to me how many things it has totally wiped from my memory.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#45
tiredblood
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Posted 04 August 2016 - 07:55 PM
....All my Drs. say my symptoms are from the sprycel....the endo, cardio, pulmo, gyno, and gastro....even an urgent care Dr.
Isn't that amazing? But not the onc..."
I've had that happen too a couple of times.
I love knowing all of you are out there...makes me feel sooooooo much better knowing there are others like me inhabiting the planet!!!!!!
Me too, Surfdaisy76. Sometimes I think you guys help preserve my sanity-- just knowing others go through many of the same things with CML/TKIs. Just because many of us aren't in clinical trials, doesn't invalidate our experiences.
#46
gerry
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Posted 05 August 2016 - 02:10 AM
Brain fog is definitely TKI related. Didn't hit me until 3 years in and on a lower dosage. Just started forgetting things overnight. After a week of being off Gleevec, it was the first side effect to disappear.
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