All of our existing drugs are Tyrosine Kinase Inhibitors which inhibit enzymes that perform essential functions in our bodies. Thank goodness that Gleevec, Tasigna and Sprycel and a few additional drugs exist as they are keeping our "club members" alive! But they all have side effects. Our Doctors want us to ignore the side effects. We must take our meds! But we should share our side effects so that we know if a new symptom is Gleevec or Sprycel related or if it just happened out of the blue. For me, I had severe muscle pain weeks 6 through 10 of starting Sprycel 100. I currently have shortness of breath - not a PE. Hopefully, I can get my Doc to reduce my dose even further. But information on side effects is crucial on informed decisions on what med to take as most of us will be taking our med for the duration.
Thanks!
Adverse Effects
Started by
Jan0080
, May 19 2017 06:21 PM
7 replies to this topic
#1
Jan0080
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Posted 19 May 2017 - 06:21 PM
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#2
gerry
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Posted 19 May 2017 - 06:29 PM
Not a bad idea Jan maybe split it into a thread for each TK easier for people to look through. :-)
#3
Tucker1
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Posted 19 May 2017 - 09:20 PM
Has anyone developed Renard's syndrome? I started noticing that my fingers when cold would turn white, tingle and then reddish I was taking Tasigna at the time and my Dr. Said it was carpel tunnel, but it isn't. I am on Bousitinib now and have gone up in dose because my PCR has been going up. The problem with my hands is getting worse. It use to happen when it was very cold but now temperature doesn't seem to matter and touching anything cold hurts.
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403
#4
campanula
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Posted 24 May 2017 - 08:51 AM
Hi Tucker1 - I had this happen to me this past winter. It only happened with one finger once on a cold day, but most of my middle finger turned perfectly white and looked dead. I was pretty freaked out by it! I put it under running hot water (not too hot) for a very, very long time and the color finally came back. I assumed it was caused by the TKI. A friend later told me about Reynard's syndrome. In general I have noticed that my fingers get cold and numb daily, especially when the temperature is cold, usually late in the afternoon.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#5
chevyflame
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Posted 24 May 2017 - 03:46 PM
Hi Tucker1,
I developed Reynauds Syndrome in December of 2015. Fingers on both hands were white, cold and numb. Checked with my cardiologist to rule out any cardiovascular issues because of my past history, Quadruple bypass, heart attack and stroke. He determined that the cause was due to the TKI's necessary to treat CML. He prescribed Nifedical but that came with other side effects so now I deal with the Reynauds by wearing gloves whenever necessary. Not quite sure how to handle my cold, numb, white toes 
#6
Tucker1
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Posted 24 May 2017 - 09:46 PM
I just had a visit with my primary care doc and he suggested the Nifedical. I continue to have side effects from Bousitinib and don't want to add another drug into the mix. He said if it gets worse then consider again the mess. He too determined the cause is TKI. I carry hand warmers now even on days that are mid to upper 60's.
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403
#7
Liamsdad
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Posted 25 May 2017 - 03:23 PM
I'm on Gleevec and experience the same. Actually, my fingertips are white and cold as I type this. I keep a heater in my office turned to max at all times and wear cashmere socks to keep my toes warm. No one ever wants to come into my sauna/office so that is one positive!
Diagnosed 10/02/2015
Started Gleevec 400 mg 10/29/2015
10/29/2015 - 105% IS
01/28/2016 - 5.6% IS
02/02/2016 - 1.31% IS
04/21/2016 - 0.33% IS
07/29/2016 - 0.36% IS
10/10/2016 - 0.26% IS
01/11/2017 - 0.16% IS
04/03/2017 - 0.037% IS
06/20/2017 - 0.020% IS
07/24/2017 - 0.34% IS - switching to Tasigna
10/26/2017 - 0.47% IS - off Tasigna and now being switched to Sprycel
#8
jjg
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Posted 25 May 2017 - 05:22 PM
I was ridiculously cold on gleevec too, not so much on tasigna. Having my office set on tropical worked well to keep student consultations short until I got students from Sri Lanka
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
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