You are here

New Milestones and anxiety

I had some free time this afternoon and i watched the CML Horizons 2014 videos. In one of them, a professor said that they now want the patients to achieve the milestones earlier than before (CCR by 6 months, MMR by 12 months) and that they want to put just 2 classifications of response: optimal and failure. This topic was pretty hard for my anxiety problems - :D - because i did not achieved the optimal response by 3 months and i know that a lot of people who were sub-optimal achieved the milestones later and are doing great. Sometimes i think that those cut points are just "farmaceutical industry's" idea, and sometimes i think it's just because we have to many options and the doctors wants us to get deeper sooner. just a thought...

Hello Lucas,

The medical opinion is deeper, earlier is better; however there are many people who don't meet the milestones who live quite normal lives. At 3.5 years in I still bounce in and out of MMR and I'm ok. Guidelines are just those, not hard and fast rules and it is important you take a broad view of your treatment and progress. If the medication is working (from what I remember of your posts - ok so far) and your quality of life is acceptable to you, then focus on living and not on rather arbitrary values.

The guidelines are there as a marker to guide your treatment and serve as just one indicator as to whether your doc needs to consider a change your meds.

Take a breath and take heart in knowing a very high percentage of people with CML will probably live a lifespan commensurate with the rest of the general population (I can find the evidence if you want). As time goes on you will become more confident in understanding and living with CML - it is a marathon, not a sprint.

Best wishes

Chris

Hi Lucas, Chris has said it all really. The only thing I would add is this... you need to put the NCCN guidelines and the ELNet recommendations into context. They are an 'overall picture' of how to best work with the most suitable TKI therapy for any individual patient.
To quote Prof. Saglio
"The recommendations report the opinion of the majority of the experts and not necessarily the uniform opinion of all of them on all the aspects.Consensus is reached by elaborating the answers to a series of questions and subsequent discussions."

I think any anxiety felt about not achieving the timepoints exactly as they are mapped out would therefore be less. The guidelines/recommendations are there to guide clinicians when they are considering a change in therapy from one TKI to another. The push to get patients into a deeper molecular response has several drivers- not least the pressure of cost of long term therapy.

I don't agree that ELNet clinicans who are the authors of these recommendations are driven by the pharma industry in order to promote particular TKIs. In my experience they are more ethical than that ;o)
I do think that these updated milestones are a way of driving a change in therapy- but in the real world this is difficult, especially as we are seeing the introduction of generic imatinib. There is no doubt that 2nd gen TKIs are more potent than imatinib in newly diagnosed patients, however, imatinib is still an excellent drug for many.

MMR is a reasonable goal no matter whether you reach it in 12 months or a little longer. Keeping a stable MMR is the important thing, but as we have discussed in other posts, q-PCR is a highly sensitive test and the quality of the sample is as important as is the sensitivity of a local labs testing method.
Any q-PCR result is at least dependent on the quality of the sample tested- a sample must contain at least 10,000 copies of a normal gene (Abl or BCR etc) if a lab is to measure such a low reading as MMR. For deeper MRs the amount of normal gene transcripts need to be even larger.
Remember that adherence to therapy is also plays a part in the published figure. We know that a lot of people are not fully adherent (especially after the first year) and missing as little as 3 doses a month can have an effect on levels of response and achievement of MR.

Lucas, you are doing well and have every reason to think you will continue to respond to imatinib over the longer term and reach your MR goals in a reasonable time, and according to you as an individual.
If you are worried that your response has stalled then that would be the time to talk with your doctor about a change in TKI.

Sandy

Thanks for your reply - sandy and chris

It was just my anxiety. I'm doing good. i feel good. I heard about the diference between recomendations and guidelines. I think it's to early to chance tki and, in brazil, we only chance tki in case of resistance or failure. the goal here - in the public health care - is a CCR in 12 months. I'm seeing a doctor from my health insurance too, but just to get brand name glivec - she's specialized in m. myeloma (i don't know any doctor specialized in cml in the insurance list). I'm fully adherent to therapy - i have an app and an agenda to control the dose - and never missed a dose. i hope i can stay on glivec, because i don't have any bad side effect.

Bests,

Lucas