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An Unconventional Nilotinib Reduction

In the last couple of days I’ve just started taking a reduced dose of Nilotinib, 150mg twice a day. The unusual thing about this is that I’m only just over seven months from diagnosis and still around 6% BCR/ABL.

I’ve just recently started taking Nilotinib again after a nine week break due to a crash in my bone marrow counts and a reluctance for them to rise again. In short I was on Imatinib 400mg but at 3 months I was 26% and 4 months 20%. My consultant deliberated about switching TKI and finally decided that due to my inability to work (because of the medical requirements of my job, not physically unable) he would switch me to Nilotinib. It was a high dose initially, as is normal after switching from another TKI, but it caused my counts to drop to the point I needed a treatment break after just three weeks. The lowest results were platelets 21, Neutrophils 0.5 and Hb 10.6. The main issue I faced was that they would just not rise again! They remained broadly static for around eight weeks before finally jumping to an acceptable level.

My first Nilotinib stint worked very well against the CML in a short time, bringing it down to just over 6% and interestingly even without any treatment for a couple of months, it’s stayed broadly the same. I was given good reasoning why this is as expected.

Now the doctors have decided to start me on a low dose of Nilotinib as they know the TKI works for me but they are trying to prevent another blood count crash. Has anyone else followed this same road? If not i’ll be happy to update my results here to give further information on different doses of TKIs at ‘relatively’ high PCR counts.

I’ve been struggling with low blood values too. It has taken about a year to get to somewhat normal values.

I’m on Imatinib 400mg, not Tasigna. I have had two breaks; one for 2 weeks and one for 1 week.

It’s been a year now and values have just recently started to get almost back in normal range. So I guess it can take really long time. Plus I get the impression that these things are more common for ”younger” patients (I’m 40+)? 

I wasn’t aware about the younger patient info. I was diagnosed at 34 and now I’m 35 so fairly young for CML, possibly that has something to do with it? My doctor was fairly relaxed about the whole thing, it just took far longer for the results to climb again than he had come across before. 

Its great to hear your levels are returning to the normal range. It seems everyone reacts so differently. I’m still way below normal but not anywhere near dangerous levels now hence restarting treatment. I’ll just be interested to see how the lower dose works and if it’s effective. 

Im 31 and I was actually on Nilotinib for a very breif time roughly 2 weeks. The original oncologist actually mistakenly prescribed me only 300mg once daily. My blood levels did tank to some degree although it was so long ago I am not sure exactly to what extent. I changed oncologist to a CML specialist and I requested to be switched to Sprycel 100mg to avoid the diet restrictions with Nilotinib. I did not have low blood issues on Sprycel even at starting at 100mg. I tried to reduce to 50mg but my PCR eventually rose to .3% so I need 100mg to maintain MMR where I remain at .03%. Someday I may try 70mg if I can get another log reduction on 100mg. This has been my journey so far, cant wait till I go under .01% and I can stop worrying, although I did tell myself I would stop worrying when I hit went under .1% guess thats life with CML though...

3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01% (started dose reduction to 50mg)
28 Month PCR = 0.04% (after decreasing dose to 50mg)
29 Month PCR = 0.03%
32 Month PCR = 0.33% (started dose back to 100mg)
33 Month PCR = 0.19% (after increasing does back to 100mg)
34 Month PCR = 0.09%
37 Month PCR = 0.03%
40 Month PCR = 0.03%