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Nilotinib and c-reactive protein (crp)

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Hi all,

I have a question for you, regarding monitoring of blood indicators, and specifically crp, during treatment.

I have been on Nilotinib since june 2019 (dx), and I am PCR-U since october 2020.

My doctor prescribes regular blood tests, including crp. My CRP was 0.4 mg% upon dx (that particular lab considered 0.8 the threshold for normal values). Since starting treatment, crp has always been slowly increasing, and now it has reached 1.9 mg%, (again with normal threashold being 0.8). As crp is an inflammation indicator, i am a bit worried for cardiovascular implications - this cannot be an infection every time I get tested. My doctor doesnt seem to worry at all.

Does anyone else have experience similar to mine?

Regards,
Koralia

Reviving this post... Anyone with any insight?

Thanks in advance!
Koralia

Hi Koralia

I can’t comment on the CRP myself and it’s not something I’ve had mentioned or shown on any of the reports I am given. What I will say is dont be too concerned yourself about every measurement that you are likely to be given over the course of many years and if your consultant isn’t concerned you shouldn’t be. It’s a skill that I’ve had to learn over the last 3 years or so if they’re not worried you defo shouldn’t be. We have to remember although TKI is a silver bullet it’s a toxic one so no suprise to me that some levels over time will be “over” what they should be. The alternative is much worse minus TKI.

Al

Hi Alex, Thanks for the answer. You are completely right, of course. I'm overall greatful under the circumstances, for what TKIs offer, but sometimes small fears get the best of me. This disease, if caught early, is an upsetting mind game, maybe more than anything else. Cardiovascular issues are my weak spot - maybe because nilotinib is notorious about that. Having felt no serious effect of cml, I sometimes interpret any blip in my lab tests as the next disaster 😜 ... And this is what I call my impostor syndrome! "Have I ever been sick?!" I hope you know what I mean 🙂 Thanks again for the reassurance, Koralia

I can sympathise completely I am very sensitve to anything out of the "norm" myself. I think especially so when you are fairly new to your new normal and having a CML diagnosis.

The way I try to look at it is if TKI is keeping CML at bay then one day I will start to reduce dose that way we reduce the toxicity as lifelong treatment on this stuff is an unkown if I am completely honest. One day we may all be able to stop meds and move past CML so at the moment I accept that things are not the same and there will be things that aren't ideal health wise post CML but I am very grateful we have meds that actually do work. I was very skeptical in the beginning and day by day PCR by PCR things get more predictable and you can relax a bit each time.

Yep I felt great unkowingly having CML for 3 years before having my diagnosis. Only being on TKI do I notice changes in my body. Oh the irony!

Al

Koralia,

I had a C-reactive protein done in April of this year. According to Mayo-Rochester the threshold is <=8.0mg/L. My result was <=3.0mg/L. In looking back over your post I think your results must be shown as mg/dl. Sorry I didn't catch that at first, I thought your decimal point was in the wrong place. Unfortunately, I couldn't see how to delete this post after I discovered my mistake. frown

Hi!

Don't worry at all! It's been a nightmare for me as well, to calculate.

(CRP) mg/L = 10* (CRP) mg%

(CRP) mg% is also written as (CRP) mg/dl.

Anyhow :-)

Regards,

Koralia