I have lost MMR on 400 mg imatinib after 7 1/2 years ( 5 yr pcru ) Dr. thinks I need to first try 800 mg imatinib before switching. The reasoning is to stick with what I have tolerated until it proves ineffective. I have been told they have seen patients return to PCRU by doubling after 400 mg had lost its effectiveness. Anybody had experience doing this? If so, please describe your experience.
doubling imatinib dose to 800 mg
Posted 07 March 2014 - 05:04 AM
I have been on 800mg and really struggled with side effects. I found them twice as bad as on 600mg.
I don't have any experience with dose esclation in the context you find yourself in, you might find this article relevant
If your PCR is high enough you could ask for mutation testing
I don't think increasing your dose is unreasonable but I wouldn't stick with it long if its not working either because of side effects or efficacy. if it were me I would ask for more regular PCRs, but maybe that is just me.
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
Posted 07 March 2014 - 05:38 AM
Please post your recent bcr/abl results. Regards, Frank
Posted 07 March 2014 - 10:09 AM
It depends on how much higher the PCR was whether any action is required at all. Increased dosage may work, but side effects can be an issue as discussed above. Personally I would only escalate 200mg at a time, But sometimes other factors are involved. If the PCR is barely positive, then that can happen and it may mean nothing. Maybe it was a different lab or the lab changed equipment. Many factors come into play.
Posted 07 March 2014 - 05:45 PM
Got second opinion and just got pcr results back. Though much less than the first report, 0.221 vs. 0.537, I am still no longer in MMR. We have decided to increase Gleevec to 600 mg, return to clinic in 1 month for side effects, and rerun pcr in 3 months. If I am worse in 3 months I will switch to Dasatinib. If I am stable or trending back toward MMR then I will stay put on 600 mg.
For those interested my most recent 6 pcr's have been:
Feb 2014 0.537
July 2013 0.091
Feb 2013 0.083
Oct 2012 0.051
Jun 2012 0.002
Feb 2012 0.001
I am disappointed of course because I was all zeros for 5 years. I have had 7 1/2 years since starting Gleevec in 2006. Every day we learn more. One day there will be a true safe haven for us. We still have much to offer this world.
Posted 07 March 2014 - 09:59 PM
Your PCRs show a clear degradation of response. The new plan sounds reasonable.
Posted 07 March 2014 - 11:09 PM
You had a lot better luck with Gleevec than I did. However, I tried about a month of 800mg not long prior to switching to Sprycel, and it was way too much for me to handle. My side effects on 400mg were manageable, but 800mg was unbearable. I had a raised rash break out on my face, facial edema, severe GI issues, severe insomnia, mouth sores, etc.
On the bright side, my Onc. has a few patients that responded tremendously well to 800mg after building a mild resistance to 400mg doses. They haven't reported any difference in side effects after doubling their dose, and their numbers quickly headed back down into PCRU.
Good luck! You'll never know until you try it.
Posted 08 March 2014 - 06:16 AM
Thanks Trey for the validation. It means more than you realize.
To as many as I can reach I would like to share my heart with you. As I contemplate taking my first increased Gleevec dose since loosing MMR (just a few hours away now) I want to let everyone know how important we all are to each other. Us humans are a complicated and complex lot. We have all of that in common with one another. We have the ability to reason, for ourselves, just how precious life is to us. We can't really think of our body's without also thinking about the mind and the soul as well. When we were told we had CML. I asked: what does this mean? How will it impact my quality of life?
Since that day of diagnosis I have had time to answer those questions for myself. What we are given, our body's, our minds, our souls, become OUR (collectively and individual) responsibility, to the extent that we have control over them. We can do everything we consider right, but we will never have the control to live forever. So it becomes our responsibility to ourselves, to each other, and to our Creator to live meaningfully in the precious little time we have here.
This discussion board has been an avenue I am glad I discovered. It has revealed to me the character of many hearts (minds, bodies, and souls) and has reminded me how valuable we are to one another. I can't thank all of you enough for sharing with me, what I consider to be very intricate details of our human condition. We all have been humbled by this disease we call CML. Though I would not wish it on anyone, it is because of it that I have had the privilege to receive your insight, your courage and the expressions of your hearts.
This sharing that we do is a very valuable thing. Every single one of you make a difference with your story. Keep sharing. Winston Churchill once said, right before the Allied Forces landed in Normandy, knowing the brutality of the battle ahead but not it's outcome ,"NEVER, NEVER, NEVER GIVE UP"!
The quality of our lives is directly related to how we share with one another. It is not over until it is over!
Posted 08 March 2014 - 08:02 AM
Well, said! I first saw the cartoon below on Jerry Mayfield's super website "New CML Drug" I think it must have been his mantra. RIP, Jerry.
"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>
Posted 10 March 2014 - 02:28 AM
I am sure that you will be fine with 2nd generation TKI. I hope we will have a cure in hand in next couple of years.
When did you achieve MMR ( .1 % 3 log reduction ) ? I mean how many months after starting gleevic ?
Posted 10 March 2014 - 05:31 AM
I achieved PCRU within 12 months, a very fast response. My oncologist says that it is unusual, in his experience and research, to see the loss of PCRU, not to mention MMR.
Gleevec, as wonderful as it is, is still in its infancy. There is much still to learn about it and the other TKI's. We are in the frontier. Where it all settles out is anybody's guess. In the mean time we push forward.
For those interested. I also take omeprazole for mild Gastroesophogeal reflux, and naproxen for pain associated with knee replacement surgery. All my other blood values are great and I have been cleared for knee revision surgery in May. Otherwise, I am as healthy as a horse. I am up at 5:30 every morning and go to bed between 10//11pm. At 65 I swim a mile everyday, working on a second college degree, take piano and voice lessons, love to hunt and fish,and I am involved in the community. I have a tremendous amount to be thankful for. I will muster everything within me to continue in those endeavors. Worthlessness to me is sitting around and doing nothing. Life is a gift, I have opened the package and it's many ribbons. I like it. It's not over until it is over.
Posted 10 March 2014 - 05:54 AM
naproxin + gleevec may not be good combo...especially with alcohol...Do you take alcohol once in a while...?
It is extremely rare to loose MMR before 7 years after achieving the same in 12 months. Any way you are going to be fine with higher dose or 2TKI..
AND we will have some good news on CURE in two years time...
Posted 10 March 2014 - 09:56 AM
PPI drugs like omeprazole can interfere with some TKI drugs. That is especially true for Sprycel. For Gleevec the data is less clear. Small studies show it is OK with Gleevec, but we are all different. So that may possibly be an issue in your case. But increased Gleevec dosage may overcome it, if it is an issue at all. Something like this could be a possible scenario for your loss of deep response, which is indeed very unusual. The slowness of the loss of response also suggests a possible uptake/absorption issue.
Posted 10 March 2014 - 11:59 AM
I have thought as much and have discussed that with oncologist.No one can say for certain. Too early to know and it's quite difficult to manage other conditions concomitantly with CML. I have tried getting off ppis but reflux raises it's ugly head.
VERY valid thinking Trey. I appreciate your attentiveness. I even control my diet based upon Gleevecs properties.
I have to be all over the ppi issue if I have to switch to Sprycel. Hoping I don't. I'll be ready if it comes to that.
many thanks...it means a lot.
Posted 10 March 2014 - 06:23 PM
I loved what you had to say about your experience and our sharing here on the World Wide Web what each of us goes through and how it impacts and helps each other.
In that vein, be aware that your may not be able to take omeprazole while on Sprycel. Sprycel is processed in the stomach and there must be the right amount of stomach acid available. No antacids are allowed within a certain number of hours of taking Sprycel for that very reason.
Just a little head's up.
Hang in there.
Posted 12 March 2014 - 06:12 PM
Sorry for the delay. I never reached MMR with Gleevec, even after 18 months. The lowest I got was 2.5% according to a BMB, and I plateaued there for a good 4-5 months before switching TKIs. After just three months on 100mg Sprycel, I reached MMR with a 1% on the international scale, according to my most recent BMB.
Posted 01 July 2014 - 01:31 PM
How are you doing now ? have you changed your TKI ?
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