I was able to cut my Gleevec to 300 mg. last March, after really hard lobbying of my Hematologist. My BCR-ABL showed one transcript 3 months out and none at 6 months. I am feeling lots better. I am getting free Patient Assistance Gleevec from Novartis. They aren't as good at customer service as the specialty pharmacies but it's free.
The ASH conference sounded like there was support for dosage reduction. I follow Canadian CML group on Facebook and this is the source of my info.
4 replies to this topic
#1
crob20
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Posted 06 December 2016 - 12:34 PM
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned
#2
SandyG353
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Posted 10 December 2016 - 05:36 PM
I am glad to hear that you were able to cut your Gleevec doseage and feel well. I, too, have been reading the presentation that were given at the Ash conference. I read that some are reducing the doseage and then discontinue it after remaining in remission. That would be something that you might in the future be able to do.
#3
trailcml
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Posted 06 February 2017 - 10:23 AM
I posted a month or so ago that my onc was allowing me to reduce my imatinib dose from 400mg to 300mg given my good numbers and about 2 yrs into treatment. I'm about a week into the new dose and I can absolutely say that the side effects are reduced. My eyes are no longer puffy in the morning, I have more energy and I don't feel that brain cloud nearly as much. I was able to tolerate all of the side effects well enough but the lack of decent energy made my running tough and running is very important to me. I did have to push my onc to allow me to do this and I'm glad that I did and would suggest anyone out there in a similar situation does so as well.
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
#4
Red Cross Kirk
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Posted 06 February 2017 - 10:41 PM
I posted a month or so ago that my onc was allowing me to reduce my imatinib dose from 400mg to 300mg given my good numbers and about 2 yrs into treatment. I'm about a week into the new dose and I can absolutely say that the side effects are reduced. My eyes are no longer puffy in the morning, I have more energy and I don't feel that brain cloud nearly as much. I was able to tolerate all of the side effects well enough but the lack of decent energy made my running tough and running is very important to me. I did have to push my onc to allow me to do this and I'm glad that I did and would suggest anyone out there in a similar situation does so as well.
TrailCML,
Have you discussed with your onc how long you would take 300mg per day before another dose reduction, if your PCR stays low?
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#5
trailcml
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Posted 07 February 2017 - 03:41 PM
Red Cross Kirk,
No discussions if/when to go lower than 300mg. He was very reluctant as I'm not PCRU (very close but not quite) and had originally stated that I should be PCRU for a couple years before we consider any changes. My body can easily feel the difference with the reduced dose and I have no additional issues that I've seen reported. Next PCR is not until June so I'll have to wait & see then. But, if I'm PCRU at that time I would consider asking to go to 200mg.
Thanks.
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
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