I am on Bosuitinib 400mg and it has been a challenge. Recently I had an iron infusion and had a really hard week after the fatigue and muscle cramps kept me off work. Talked to the Dr. office they took more blood as usual and said my CPK is elevated up from 139 in August to 169. Not real high but they asked a lot of questions about my muscles. I read that it can indicate muscle damage. My question: is that from the TKI. I know that this TKI is suppose to have less side effects but I seem to get something new the longer I am on it and feel awful a lot. This is my 4th TKI and I am beginning to feel I will have to make a change soon. Dr. Drucker suggested to go back to Sprycel at 50mg. But if 400mg of Bosuitinib is just maintaining my PCR at .242 (I think was the last) how is Sprycel going to maintain that or lower it? An information would be greatly appreciated.
Need help understanding CPK Creatine Kinase
#1
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Posted 09 November 2017 - 10:06 PM
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
#2
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Posted 10 November 2017 - 01:33 AM
Give Sprycel 50mg a shot, Tucker. With the exception of the colitis you had a great response with Sprycel. There is a big difference between the side-effects of Sprycel 100mg and 50mg so there is a chance that you won't suffer a reoccurrence of the colitis. This may be your ticket out of the wilderness of CML tki side-effects that you have been wandering around in for the last thirteen years. Besides who are we to argue with Dr. Drucker. With your low tolerance of tki's hopefully you will see your way to Sprycel 20mg in short order. Good luck to you.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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#3
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Posted 10 November 2017 - 11:19 AM
Agree. Buzz said just what I would say.
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.
#4
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Posted 15 November 2017 - 10:04 PM
#5
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Posted 16 November 2017 - 09:16 AM
You are someone who seems to need higher dosage than most. The current Bosutinib dosage does not appear to be working well enough to justify continuation. So I think Dr Druker's suggestion is a good one for your situation. It is possible you could tolerate it better this time, especially at lower the dosage.
#6
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Posted 19 November 2017 - 06:10 PM
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
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