Hi everyone,
Really hoping someone can help ease my worry and anxiety. I was diagnosed with CML in March 2017. I was put on Imatinib and in September was at a 3 log. Had an appointment with morning and my result was 2.9 log. The oncologist told me that I seem to have plateaued with Imatinib and is changing me to Nilotinib. I have a bone marrow aspiration scheduled for the 26th to see if there have been any mutations. My question is: has this happened to anyone (where you have stopped responding to a medication and had to switch) and if you have had any mutations occur (what has been the treatment to that???)
Thank you for your time,
Sonia
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Plateaued with Imatinib
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Hi Sonia, I started on Imatinib in January 2015 and can still remember my doctor asking me if I was taking the drug because of lack of progress with Imatinib, in September 2015 I was put on Nilotinib, and have been on it ever since with lots of good progress since, so you’re not alone in fact probably same as a lot of us CML ‘s
Hi Sonia,
I presume that you have a record of your PCR-bcr/abl scores which are taken from peripheral blood usually at 3 month intervals.If you have reached a log reduction of 3 then this would indicate that your bcr/abl percentage or ratio is down to 0.1% which means that bcr/abl levels have decreased to approximately 1,000 times below the standardised baseline or compared to when you were first diagnosed nearly 2 years ago.Most specialists and researchers regard being at 0.1 or below as being in safe territory but I suspect that your oncologist is working to published milestones or timelines and was expecting there to be a reduction of bcr/abl scores in the last 3 months.
My own view is that you have done exceedingly well to reach the stage of reduction to log 3 or 0.1 percent bcr/abl;in addition there is not much difference between a log 2.9 and a log 3 as the test is not that sensitive;personally I would be interested to see what the next PCR test throws up and then react.
If you have reached 0.1 then you are at MMR-major molecular response and as well sometime back say at 12-18 months after starting treatment you had gained a CCyR-complete cytogenetic response as you were between 1% and 0.1%;you may have been a bit slow in reaching your milestone or target but I would not see that as a major issue because you passed it-ask your oncologist I suggest.
The objective of course is to try to reach eventually a log of say 4.5 and a bcr/abl score of 0.0032% or better and is referred to as a CMR or MMR-complete molecular response and major molecular response.
What I would query is why after nearly 2 years you are to have another bone marrow aspiration as normally these are used in year1 to measure the cytogenetics;the PCR using peripheral blood is usually relied on after year 1 and of course mutations analysis can be undertaken using this method as well.I am aware that practises differ between oncologists and also in different parts of the world.Nilotinib is reputed to be a little more powerful than imatinib but of course the dosing regime involves fasting and also it has a different side effect profile and is reputed to be hard on the heart-if you have any issues in this area ask for an ECG and also monitor the QT interval in respect of atrial fibrilation.
I hope that this will help you to put your mind at rest until you are able to discuss matters with your specialist.
With best wishes
John
Thank you so much for your reply. It's always nice to hear from someone who has gone through the same experience. I'm hoping my mutation results come back negative; however, what if it doesn't? Would you happen to know what the course of treatment is? Does Nilotinib take care of the mutation?
Sincerely,
Sonia
Hi John,
Thank you so much for your reply. I'm forever grateful for this forum!
That being said, the oncologist was hoping for quicker results. She felt that I should have been at a 3.5 log reduction at this point, and seeing as how I went from a 3 log to a 2.9 log, she felt that I have plateaued with Imatinib and believes I should switch to Nilotonib.
As for the bone marrow biopsy, she wants to make sure my 'plateau' is not caused by any mutations that have occurred.
After yesterday's appointment, I felt that the medication that is keeping me alive is no longer working....and I seriously panicked and worried for hours. My oncologist is very 'dry'; I knew this was the place I needed to turn to for answers. So very grateful for your response.
Sincerely,
Sonia
Sonia, this has happened to a lot of us. There are 5 TKI's, so the likelihood that one or more will work brilliantly for you is high. Tasigna is a reasonable next try, but be mindful that its makeup is similar to imatinib's, so if it also isn't super effective, don't despair. Many people who get suboptimal results with the imatinib-like configuration respond very strongly to dasatinib. I was a turtle on imatinib and saw an immediate dramatic drop as soon as I switched to dasatinib. For others, it has been bosutinib that put them over the safety line of MMR. Hang in there!