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Resistance to tki

Started by Coach Hatcher , Apr 06 2017 08:31 PM

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3 replies to this topic

#1 Coach Hatcher

New Member

Members
2 posts

LocationFt. Worth, Texas

Posted 06 April 2017 - 08:31 PM

Im new to site Gail asked me to post so here it is. I started with sprycel and after 1.5 years my doc changed me to bosilif because i became resistant to sprycel. Now ive been on bosilif for 1 year and my last molecular jumped up from.13 to .32 so it seems im becoming resistant to it. Im seeing my doc again may 1 to get another molecular test and discuss possible new drug attemt. Im open to questions i should ask her help appreciated. Thanks

I started with 100 mg of sprycel in aug 2014.
Changed to 140 mg sprycel in dec 2015 till end of feb 2016.

Was switched to 500 mg bosilif in march 2016 my molecular number was .64 at that time.
# went down to .42 in june.
# went down to .26 in sept
# went down to.13 in jan 2017
March # went up .32
Getting new number may 1

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#2 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 06 April 2017 - 08:51 PM

Coach Hatcher, it would be helpful if you posted your entire CML PCR testing history ... thank 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.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#3 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 08 April 2017 - 07:15 AM

Coach,

Welcome! I don't know if this is the first time you've posted here but I'm glad you did!

One jump does not a trend make! And, it does not necessarily mean the drug is no longer working for you. We do have blips and plateaus and .13 and .32 are not that different from each other. If you had gone from .013 to .32 that is a log increase and something to be concerned about. You still have Tasigna, Gleevec and Ponatinib in your arsenal and time to wait and see what another 3 months test says.

The one thing I wonder is, it has been 2.5 years and you've never reached MMR (.1%)? But you have reached CCyR (1.0%) so that is good. No need to panic.

Are you taking full dose Sprycel? (100 mg)

It really does help to have a history and many of us include them in our signatures.

My one question for the doc would be, "Why the rush? Why can't we give it another 3 months and see what happens?" If he says he is concerned about mutations, etc. not likely at that low level. If you haven't had a chance take a look at Trey's information for the newly dxed. I know that doesn't exactly apply in your case, but still good information. You can find it here:

community.lls.org...reading-for-the-newly-diagnosed-cml-patient

Hope to hear back from you soon.

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>