I can relate to brain fog. I have marked the days of the week on the blister pack of Gleevec and set my alarm each night to remind me to take it. Somehow I did miss a dose. Didn't discover it till the next night. Does anyone know what effect that can have? I'm about 8 weeks into treatment.
Missed dose
Started by
Gail's
, Mar 25 2015 09:28 AM
11 replies to this topic
#1
Gail's
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Posted 25 March 2015 - 09:28 AM
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
#2
tazdad08
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Posted 25 March 2015 - 09:56 AM
Dont sweat it. A single missed dose will do no harm. That happens to almost all of us from time to time. lol. Best of luck and thank God for each day!
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!
#3
August1
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Posted 25 March 2015 - 10:28 AM
I agree. A missed dose won't hurt. Some people even take breaks from treatment for various reasons. Just try not to make it a habit.
Take care,
#4
Frogiegirl
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Posted 25 March 2015 - 05:22 PM
The pharmacist at my cancer center said I could miss several doses and still be ok. .....not that I'd recommend it. Don't sweat it:)
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
gerry
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Posted 25 March 2015 - 06:00 PM
I've wound up vomiting shortly after taking the Gleevec and figured I didn't get any for the day, only happened a couple of times.
There was information that if you regularly missed your dosage minium 3 times a month then there was the possiblity of resistance building.
#6
JPD
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Posted 25 March 2015 - 06:27 PM
My Onc told me that they dont even expect 100% compliance with meds. Like, even in research, they assume a missed dose here and there. When I told him I had missed 2 or 3 doses over the 90 period, he said that was "fine"
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#7
Antilogical
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Posted 25 March 2015 - 07:34 PM
I've missed 1 dose in 3 years. I got sick from the anesthesia and pain meds when I had my knee replaced and skipped a dose because I knew it wouldn't stay down. I was right. Anyway, I obsessed over it, until I got my next test results 3 months later. No changes.
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.
#8
Billie Murawski
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Posted 25 March 2015 - 10:37 PM
Hi Gail,
Three weeks after my dx I got pneumonia and my wbc went down to something like 2000 I really didn't understand anything about cml but I was taken off Gleevac 400 for two weeks. I'm sure you'll be fine.
#9
hannibellemo
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Posted 26 March 2015 - 06:09 AM
I hadn't missed a dose in several years and one morning I woke up, ate breakfast, went to take my pills (I keep them in a weekly pill container) and there was yesterday's pill container with my pills still in it! That's when I knew CML no longer ruled my life!
I'm extra cautious about taking it now, though! 
Not to worry!
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>
#10
Gail's
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Posted 26 March 2015 - 04:16 PM
Thanks for the reassurance everybody. I think what happened when the alarm went off to remind me to take my pill, I went into the kitchen to take it and in that 30 second trip I forgot why I was in there. Probably got a piece of chocolate which I've read is good for memory. Haha
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
#11
chriskuo
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Posted 26 March 2015 - 04:49 PM
If you discover the missed dose within 8 hours, you should be OK to take it. If it is more than 8 hours, forget it and make sure to take your dose the next day. They have done studies mapping results with compliance. At 90% compliance, there is a detectable difference in average results over time. So if you miss 1 pill in a month, it shouldn't be a big deal. If you start missing 3 or more times a month, you should consider coming up with a new system for reminding and taking pills.
For some of my pills, I use a weekly container with 7 daily slots. I haven't had to do that with my TKI yet.
#12
pammartin
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Posted 27 March 2015 - 04:40 AM
Like Gerry noted, I probably lost more when my stomach revolted than I took those first few weeks. I used to be fanatical about taking my dose and at the same time every day. I would almost hyperventilate if I wasn't home at the appropriate hour and had forgotten to bring my pill along.
After a month or so of driving myself crazy I talked to my oncologist about it. No, he would not sanction missing a dose, but he said there is medicine in your body and usually missing a dose of something is not nearly as horrible as we are led to believe. After my first 'break' from Sprycel for several weeks because of low blood counts I stopped worrying so much. The same people who pounded it into my head that I had to take this med every day and missing a dose would be potentially dangerous stopped the same med for weeks because it was kicking my arse.
You will get into a routine, but don't worry too much. You are doing a great job and the learning curve sucks. It does get better.
Pam
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