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Gleevec Resistance?


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#1 Krock41976

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Posted 04 February 2016 - 04:36 PM

Diagnosed in June 2015. Started Gleevec in early July. I reached the hematologic response pretty quickly after that. My doctor didn't test me for cytogenetic but she said she feels pretty certain I've achieved that. I tested for molecular response in late October and had gone down to .05. My doctor indicated she felt I should have been lower by that point, but due to some complications I'd had early in my treatment process, she suggested waiting three months and retesting. So I was just retested last week and my numbers actually came back higher (.09). My doctor said this was very concerning to her because of my age (39). (Not sure what she meant by that. Of course, I didn't think to ask her that at the time!) She said we could wait another three months and test again, or I could just go ahead and do the drug resistance testing. I decided to do the latter, so I'm waiting for those results sometime next week. I guess if I'm resistant to the Gleevec, there are plenty of other drugs to try. But she also said that if I'm resistant to all of the drugs, I'd need the bone marrow transplant. So I have some questions. If you're resistant to one drug, is it more likely you'll be resistant to all them? I'm just not sure why my doctor seemed so concerned with these results. She originally wanted to put me on Tasigna, but my insurance would only approve Gleevec at the time. Would you be concerned if you were me? Just trying to get a handle on this news. Thanks in advance!



#2 gerry

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Posted 04 February 2016 - 06:01 PM

What the heck. You have better than optimal response being MMR before a year has gone past. I would be looking to get another blood test to see if it a blip rather than a trend.

http://bloodref.com/...ml/cml-response



#3 Trey

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Posted 04 February 2016 - 07:38 PM

You have done extremely well.  Forget what the Onc said.  You have no signs of even the slightest drug resistance.  But many people find themselves in a PCR plateau after a while, especially with Tasigna it seems.  The last two PCR variations are not significant.



#4 Gail's

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Posted 04 February 2016 - 11:03 PM

Have to say I envy your numbers Krock. I've been on gleevec a year and just reached pcr of 0.35. Had repeat BMB and should get results tomorrow.
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

#5 rcase13

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Posted 05 February 2016 - 12:50 AM

It does seem like your doing very well. Even if you do have to switch any of the second generation drugs would probably work great. The forum is littered with people that grew resistant to Gleevec and then did excellent on one of the second gen drugs.

I also have some concerns with my CML and my age. I was diagnosed at 45. It's hard to imagine the body tolerating these drugs for 25 more years. I've kind of excepted that I won't make it to retirement.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#6 r06ue1

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Posted 05 February 2016 - 06:21 AM

I believe that there's a +/- 1 log variance in PCR testing?  You could have just been slightly more detectable this time around (more BCR-ABL in the sample).  If anything, just get a second PCR done or wait three months and see if you continue to trend upwards or not.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#7 hannibellemo

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Posted 05 February 2016 - 06:27 PM

Her comments are a hallmark of someone who doesn't know a whole lot about CML (IMHO). Fortunately, you're doing so well, she can safely learn on you!


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>


#8 hannibellemo

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Posted 05 February 2016 - 06:29 PM

Gail,

 

Why is your onc torturing you at your level of response? You shouldn't be having any more BMBs.


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>


#9 Gail's

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Posted 06 February 2016 - 12:32 AM

Hannibellemo, we talked about the pcr rate of drop and she felt I hadn't reached the expected point. She called today and said my bmb was disappointing, that I had reached mmr but not ccyr. So she wants me to start on sprycel next week. I didn't understand enough of what she was saying about the bmb report to tell you the details.
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

#10 Buzzm1

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Posted 06 February 2016 - 01:12 AM

Hannibellemo, we talked about the pcr rate of drop and she felt I hadn't reached the expected point. She called today and said my bmb was disappointing, that I had reached mmr but not ccyr. So she wants me to start on sprycel next week. I didn't understand enough of what she was saying about the bmb report to tell you the details.

Gail, I found this article that includes expectations of treatment http://www.cancer.or...eating-by-phase


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#11 gerry

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Posted 06 February 2016 - 02:23 AM

Hannibellemo, we talked about the pcr rate of drop and she felt I hadn't reached the expected point. She called today and said my bmb was disappointing, that I had reached mmr but not ccyr. So she wants me to start on sprycel next week. I didn't understand enough of what she was saying about the bmb report to tell you the details.

I think that might be round the other way - reached CCyR not MMR. How long have you been on Gleevec again?



#12 Sneezy12

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Posted 06 February 2016 - 08:26 AM

You need a new Oncologist who knows about CML.

#13 hannibellemo

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Posted 06 February 2016 - 08:55 AM

You need a new Oncologist who knows about CML.

Gail, Krock, I think Sneezy is talking to both of you. Here is a link to very helpful information http://www.nccn.org/...s/files/cml.pdf  Read it and based on that information have your doctor explain exactly why they think what they do. Pay particular attention to section 5.4. It has guidelines about where you should be within the length of time since diagnosis. It appears you are both ahead of the curve.

 

Gail, can you post a copy of your most recent BMB report (note: if you are not getting copies of all of your reports start doing that now). If you don't have it, call and ask them to get it ready for you and pick it up.

 

A PCR of .035 is definitely MMR on the international scale (1% being CCyR;  .1% being MMR). 

 

On the other hand, switching isn't a bad thing. However, it may mean a whole new set of side effects to get used to and leaving Gleevec when it is going to become somewhat cheaper in the future by going generic. That may or may not be important to you. The point being, if you want to switch, that's fine, but you don't need to switch because you appear to be doing just fine on Gleevec. Of course, it would really be nice to know exactly what your most recent BMB says.


Edited by hannibellemo, 06 February 2016 - 09:04 AM.

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>


#14 Buzzm1

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Posted 06 February 2016 - 01:54 PM

deleted


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#15 hannibellemo

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Posted 07 February 2016 - 07:46 AM

I found this PDF I downloaded last year; I've attached the link. (Note, this opens in a Google window and you have to click on the PDF second link from top to download.)

 

https://www.google.c...Aid CML&es_th=1

 

This shows a chart with optimal, suboptimal and failure benchmarks for specific time periods since diagnosis and shows when the doc would want to check for mutations.

 

I think both of you will find you are within the recommended benchmarks.


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>


#16 Gail's

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Posted 07 February 2016 - 12:18 PM

Hannibellemo, I do get reports. She emails them. Just don't have latest one. My pcr is 0.38 % not 0.03%. I read your chart thanks for posting. What I gathered is that I am in suboptimal range. I sent her an email a couple nights ago asking if I could just increase dose of imatinib. I know those side effects, don't want to deal with new ones.
Also considering a visit to Dr Druker. He's really spendy for initial consult since he requires all the tests to be redone by his preferred labs. I checked about a referral and since my onc seems to be following Kaiser guidelines for treatment and I am improved, it would not be covered. But may be worth the out of pocket cost for peace of mind.
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

#17 hannibellemo

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Posted 08 February 2016 - 10:14 AM

Gail,

 

With all respect, I'm not sure you are looking at the chart correctly. You were dx in June 2015, at the most 9 months ago. According to the guidelines you should reach CCyR at one year. Since your onc hasn't done a FISH since dx you won't know by that test, but, at .38% you are very close to MMR (.1%), by PCR which is better than CCyR. Generally, people who have reached MMR by PCR have also reached CCyR, by FISH. But this confusion is why I wish oncs would only do FISH until CCyR is reached and then switch to PCR testing.

 

So, no, you are not suboptimal, according to the chart you are ahead of the guidelines.

 

P. S. I had to laugh after re-reading this at all the acronyms! Felt like I was having a discussion with someone at Iowa DOT!   :) (Known for using all sorts of acronyms)


Edited by hannibellemo, 08 February 2016 - 10:16 AM.

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>


#18 Krock41976

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Posted 08 February 2016 - 04:58 PM

Thanks for all the feedback, everyone! I am waiting on the drug resistance test results. At my next ONC appt, I will definitely be bringing up a lot of this information and see why, specifically, she was so concerned about the numbers since it seems I'm right on track (other than the slight upward trend last time, which could just be a blip). I'll also be asking her how many CML patients she treats. I previously had the impression she had quite a few, but not I'm starting to wonder!



#19 Gail's

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Posted 11 February 2016 - 10:37 PM

Diagnosed January 2015.
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

#20 gerry

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Posted 13 February 2016 - 04:49 PM

Hi Gail,

You've reached CCyR - complete cytogenetic response which is the major one. I think the European guidelines talk about 12 months for MMR being optimal response, which is why your doc was keen on it.

In the end Gleevec may not be the drug for you and you may need to switch to achieve MMR.

 

I can understand why you would be reluctant to switch, I would have been the same.

If I had had to switch, I would've asked my doc if I could start in the middle range of Sprycel (50mg) and gradually built up if I needed to.






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