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Not the PCR result I was hoping for

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Dear all

I just received my 6 month PCR and it has risen to 18 % from 11 % at 4,5 months (at DX 80 and 3 months 16 %). This happened after having a two week break in the end of april/beginning of May and otherwise being on low dose nilotinib (400 mg daily). I must say I am getting quite scared of my treatment perspective since I was really hoping that even the low dose nilotinib has pushed me at least below 10 %. I am not able to take standard doses since my platelets (and somewhat ANC) are low. 

I know that dasatinib is an option. And when rationalizing things, I know that nilotinib does not have had the chance but the anxiety and fear is getting the best of me at the moment. I know I am not running out of options but I expected much more quicker treatment response (as do we all) and I am getting the feeling that my CML is not so simple to treat.

 

Has anyone been in a pickle like this and can relate?

 

Timo

Timo, it is so frustrating when things don't go the way you hope they might and so easy to get scared, most of us have been there at some point. As I look at what you tell us though, it appears that you have had one increase (one increase is not a trend) and that test was after a two week break in treatment. You will know more after the next couple of tests. Good luck!

 

Pat

Hi Timo,

The rise from 11% to 18% isn't much to shout about when you consider you are early in treatment and you had a 2 week break. (The most likely factor for the rise)

Yes give Nilotinib a chance to kick in it takes time to build a threshold (and remeber you are on a lower dose that will have some impact and work slower). If you move to another TKI you will have then tried 3 of 5 (or 6). Thats almost all TKIs available to you and I always say you need to keep as many in the back pocket as possible for potential resistance and mutations.

I know you are concerned about your other translocation you mentioned before so I think at this stage you are in panic mode (and naturally so) and taking 1+1 and making 1000.

Many of us are turtles on this forum sometimes that happens in the beginning others in the middle and anytime in between. I was stuck for a long time around 0.1 then bammm down it went again. It seems to happen in chunks at times and its not always in the way we want it to happen. And sometimes that can be up a few times and then a big drop (seat of your pants time). It's like being on a rollercoaster and I hate rollercoasters lol.

I still believe your drop from 80 to 16% is a nice drop (and indicitive enough the meds work) so I think you are going to be fine it's just harder said than done when you are not in the driving seat I know. And these milestone markers are a massive cause of anxiety. Why 10% and not 20% why 0.1% and not 0.3%. CML couldn't give a monkeys about any of that they are statistical markers and thats really it. Guidance at the most. But I have been there and you worry because they are the experts and you dont want to be "left behind".

Al

Hi!
 

Thank you all. I've had the chance to consult with my consultants and had time to reassess the situation. Although one of the consultants was a bit more worried, the other one did not take this 18 % as anything major due to my treatment course during the last two months. He was very calm about the situation and also pointed out that those milestones are valid for a cohort of 1 million patients. But you can not take a single patient, not considering their treatment history and put them strictly into the guideline context. Trend over a long

Regarding the translocation, they said that since this was present in the very beginning (extremely likely) and I had a medication response then it is not a showstopper. What clones come up later in the treatment journey, is a lottery but this goes pretty much for anyone for a few years after dx.

I am currently continuing my low dose nilotinib but consultant will let me know how to proceed - most likely with nilotinib with a slightly increased dosage.

 

timo

Absolutely mate. We panic and for the most part our doctors don’t. Exactly that’s my thought you responded well in the beginning so stay the course I am sure it’ll all come crashing down eventually. It’s just happens when it wants to and unfortunately not on our timeline.

All the best

Al