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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%

So it’s looking as though this reduction in Nilotinib dose has not worked. I’m just back from seeing my consultant and my first PCR test after taking 150mg twice a day for six weeks has shown an increase from 6% to 7%. My platelets are hovering around 50-60 so there is a reluctance to increase my dose again because it’s likely they will crash again like last time when I was on 400mg twice a day. I’ve had another PCR done but those results will take minimum three weeks.

We have discussed maybe switching to Dasatinib but my consultant isn’t sure that won’t cause the same blood count crashes that I’ve previously had on higher dose Nilotinib. He’s waiting to conference call with several specialists about my case before deciding what to do but there is no plan at the moment. The increase in bcr/abl has really thrown a spanner in the works. I’m also on the verge of losing my job as in my profession I’m not able to work until in a much more stable area. Basically I need to get my platelet counts up and bcr/abl down but there isn’t a clear plan of how to do this! 

David - Sorry to hear all this.  I had myelosuppression my two years on Gleevec, which as you know is similar to Tasigna.  It wasn't as bad as yours, but it was persistent and not improving.  When I switched to Sprycel (which is very different from Gleevec/Tasigna), my numbers noticeably improved.  When I decreased the initial 100 mg to 70 mg, they all moved into the normal range.  Worth a try.

Thanks Kat, it’s difficult to know what the best way forward is but my concern is that I’m somewhat time limited work wise. I work in an industry that requires strict medical checks and if I don’t improve soon my contract will be terminated. I’m keen to try Sprycel as Imatinib and Nilotinib have both proved troublesome, so hopefully moving to a drug with a slightly different make up might help. I’ve coped quite well so far but now the mental side of things is starting cause some strain. It’s a help to hear that’s worked for you.

Well, that's another point in Sprycel's favor.  I was doing OK on Gleevec (CML-wise) but I was definitely a turtle.  When I switched to Sprycel, my PCR zoomed down quite a bit, after just a few weeks.  I do think that people have different responses to these TKI's - you might do really well on Sprycel and be able to show them that improvement.

David, Sprycel 50mg, at most; if Sprycel is going to work for you it will work at 50mg. or less.  Easier on the counts too.  

Thanks for the info Kat and Buzz.

I think I’m pretty set on requesting a switch to sprycel and seeing how that works. It was discussed briefly but the decision was delayed so more research and conversations with other doctors could take place. The low doses seem very attractive if they will still be successful with the PCR counts, certainly worth a try.