Advanced Member
Posted 08 February 2016 - 04:42 PM
Hello everyone, what is a drug resistance test, is it a blood test? I do NOT have the results of my latest PCR done January 6, 2016, and today is February 8th. My last two PCR results read 0.18%. If Jan. 6th is the same, I know that the Hematologist will not increase my dosage, I guess I will have to ask for a second generation drug? Am I making any sense? I know that you are going to tell me that I need a doctor change, but I am so close to 0.1% MMR. Thank you in advance.
acl
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
Advanced Member
Posted 08 February 2016 - 05:30 PM
How long since diagnosis and the start of Gleevec?
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.
Advanced Member
Posted 08 February 2016 - 07:16 PM
There is no such thing as a resistance test. There is a kinase mutation test. But there are many possible reasons for resistance or even slower response. And no, you do not need a new Onc. You have a number of options, and you just need to either continue doing what you are doing or do something else if you want to.
Advanced Member
Posted 10 February 2016 - 05:17 PM
There is no such thing as a resistance test. There is a kinase mutation test. But there are many possible reasons for resistance or even slower response. And no, you do not need a new Onc. You have a number of options, and you just need to either continue doing what you are doing or do something else if you want to.
Hello Trey and Everyone, Thank you for the reply Trey. The nurse called with my PCR results from January 06, 2016. I have 0.18% (IS.) cells containing the BCR-ABL gene left in my blood. She said that the doctor is happy with it and wants me take the same dosage. There has been no change since September 2015. Sept. 0.18% Nov. 0.18% Jan. 0.18%, I wish a knew why the slow response. He doesn't seem to be looking for PCRU as long as the numbers stay low. I have a copy of all my PCR results and on everyone of them he wrote the target is .15%. My next appointment with him is February 24th, and after that appointment I have a few options, I have to see which one will I choose. Any advise/opinion is appreciated. I thank God for all of your support! Thank you.
Kat73, To answer your question, I was diagnosed March 2014, and I take 300 mg. Imatinib. Thanks.
acl
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
Advanced Member
Posted 10 February 2016 - 10:34 PM
You are doing well, so no change is required. I would just stick with what you are doing for a while longer. But there is no harm in switching drugs if you really want to.
Advanced Member
Posted 11 February 2016 - 01:20 PM
You are doing well, so no change is required. I would just stick with what you are doing for a while longer. But there is no harm in switching drugs if you really want to.
Hi Trey,
Thank you for the encouragement!
acl
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
Advanced Member
Posted 15 February 2016 - 08:40 AM
acl,
I don't remember why you aren't on 400mg of Gleevec, but I assume it's some sort of side effects issue? You say your onc won't raise you to the "normal" starting level? Just wondering why, because that may be the small boost you need to make it over the hump to MMR.
Although many do, I personally wouldn't want to go higher then 400mg on Gleevec, I'd rather just switch to a 2nd gen TKI.
Good luck!
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>
Advanced Member
Posted 15 February 2016 - 12:51 PM
acl,
I don't remember why you aren't on 400mg of Gleevec, but I assume it's some sort of side effects issue? You say your onc won't raise you to the "normal" starting level? Just wondering why, because that may be the small boost you need to make it over the hump to MMR.
Although many do, I personally wouldn't want to go higher then 400mg on Gleevec, I'd rather just switch to a 2nd gen TKI.
Good luck!
Pat, the reason why I am not taking 400 mg. Imatinib is because the Hematologist does not want to mess up my liver, he does not want me to have liver toxicity! He doesn't seem to be looking for PCRU, all he talks about is .15%. I feel ill to my stomach when he mentions .15%. My liver is perfect including all the other tests. I have an appointment with him on the 24th, next week, and I have a few questions for him. I feel like I should "self medicate" but I won't, not yet. Thanks Pat.
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
Advanced Member
Posted 17 February 2016 - 12:37 AM
There is no such thing as a resistance test. There is a kinase mutation test. But there are many possible reasons for resistance or even slower response. And no, you do not need a new Onc. You have a number of options, and you just need to either continue doing what you are doing or do something else if you want to.
Advanced Member
Posted 17 February 2016 - 08:43 AM
Kinase mutation test should be done when the PCR is rising rapidly and there is also loss of CCyR.
Advanced Member
Posted 18 February 2016 - 01:20 PM
ACI: I probably sound like white noise by now, but just want to tell you that I took 400 mg of Gleevec for 14.5 years before trying cessation which continues. PCRU for 14 years and no liver toxicity, ever. An expression by my late Mother pops into my head: "Don't borrow trouble." Could you ask your onc to try 400 mg and see what happens? The results might be worth the risk. PCRU feels mighty nice.
Advanced Member
Posted 21 February 2016 - 10:49 PM
ACI: I probably sound like white noise by now, but just want to tell you that I took 400 mg of Gleevec for 14.5 years before trying cessation which continues. PCRU for 14 years and no liver toxicity, ever. An expression by my late Mother pops into my head: "Don't borrow trouble." Could you ask your onc to try 400 mg and see what happens? The results might be worth the risk. PCRU feels mighty nice.
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