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neutropenia on nilotinib

I posted before regarding some odd but relatively minor side effects while on nilotinib. I have been on 300mg twice daily since diagnosis in March this year and I tolerate it very well without major issues.
My PCR at 3 months was still 19%, rather higher than the optimal 10% I was hoping for so I am still a long way away from MMR. However today's blood test showed that my neutrophil and platelets count is too low (0.91 and 56 respectively) so, on my consultant's advice, I had to come off nilotinib. I will have another test in a week and, depending on the results, I may go back on it, possibly on a reduced dose.
I realise that my blood count needs to get back to more normal values but I am also concerned that if I am not taking the TKI my CML will take over again.
Does anybody have a similar problem? Is it something that will stabilise with time or will it eventually require a switch to another TKI? If so which one? As far as I know they can all cause neutropenia.
Ironically I feel absolutely fine ( to be honest I never felt I'll!) and apart from bruising very easily I have plenty of energy and carry on with my life as normal.
Thanks for any comment

Luisa

Hi Louisa,
I imagine your doctor is concerned about your platelet count more than your neutrophil count- which although low is still at a fairly safe level if you are cautious with exposure to bacteria etc. When I had my SCT I was allowed out of isolation as soon as my neutrophils hit 0.5 and home when they reached 1.

However your platelets are pretty low (although again I have heard that some CML clinicians do not worry until their patients (on TKis) plt counts go below 20.

Hopefully you will see a quick rise in both counts by you next blood test. I understand why you might be worried at having to stop.
Iit might be that you see a significantly higher drop in your PCR result next time- I assume as you are newly diagnosed you are being tested every 3 months?

If you can possibly get to CCyR (around 1%) by 6 months you will still be on track for an optimal response according to ELNet 2013 goals.

As for other TKis, it depends where you are being treated. Dasatinib is available through the CDF in England, as is bosutinib. Both seem to be very (equally) effective to nilotinib. Have a talk to your doctor about the possibilities.

Sandy

Hi Sandy,
Thanks for your reply. At 3 months I had a bone marrow biopsy as well as the PCR. Unfortunately the sample was of poor quality and the cytogenetic analysis by chromosome banding failed. They did FISH instead and it was negative so on the report they wrote CCyR. The doctor thought it a dubious result given the rather high PCR and it will be repeated at 6 months. In the meantime I had another PCR (no results yet but hopefully showing a further drop)
I'm being treated in York but the PCR and cytogenetic analysis are done in Leeds- my doctor has only 5 or 6 CML patients (all on imatinib) so she contacted the specialist in Leeds for advice....no reply as yet.
Sometimes I feel like I'm on a rollercoaster, but I keep telling myself that it's still early days.....patience has never been my strong point!

Luisa

Hi Louisa,

Having patience is difficult when you are diagnosed with CML- given that it is cancer that can be very well controlled with TKIs, so it is understandable that you want to see some significant reduction in your Ph+ cells.

FISH testing usually looks at around 200 cells (normal cytogenetics around 20) so your result should make you hopeful- however it does mean that only the 200 cells they looked at are negative- so to compare it with the PCR result (which typically tests 10,000 cells and in some labs it can test up to 100,000) indicates that you are not in CCyR just yet. Because FISH only looks at 200 cells it has a higher false neg rate than Q-PCR. At low levels of Ph +ivity Q-PCR is highly accurate.

Results do depend on the sample quality and how it is treated after collection. For a meaningful result any sample must have the same amount of mRNA present from the control gene used (ABL;BCR or GUS) as it does from BCR-ABL1 gene- the choice of control gene depends on the lab.
Leeds is a pretty expert centre- Graham Smith is the lead there I think. Hopefully your current PCR will show a further drop - and your confidence that nilotinib is the TKi for you will be boosted.
Maybe you could do shared care between York and Leeds- given your doctor at York does not have as much experience with nilotinib? No harm in asking.

When is your next PCR result due?

Sandy

Hi luisa
Your story sounds very similar to mine, I was diagnosed March 2011, I started Nilotinib 2 weeks after Imatinib and my platelets and neutrophils dropped really low (0.9 i think) platelets hovered between 45-55 and I had to keep stopping treatment. My PCR at 3 months was 80 and at 6 months 34 so bone marrow transplant was mentioned (eek) then at 8 months after being on and off treatment my platelets and neutrophils all started to normalise, at 9 months I was down to 0.8 and now at 2 years I was 0.036.
It has been stressful and worrying full of ups and downs, like you I want those golden zeros so quickly but know I am lucky compared to many. If you want to chat I am happy to email you, hope things are going well for you.
Take care
Emma x

Hi Emma,
Thanks for your comment. It's always good to meet other fellow CML sufferers with similar experiences.
After a week off nilotinib my neutrophil count went up very slightly to 1.1 and platelets stayed the same at 56.the threshold is 1 so I'm back on full dose (600mg) with another blood test in a week or so. By then I will hopefully have the results of the second PCR (intermediate at 4 and 1/2 months) and may also have the results of the mutational analysis suggested by the consultant in Leeds. It would be so good to be told that all is going well and that they don't need to see me for the next 3 months! We are trying to sort out a holiday but with all this back and forth from the hospital, there never seems to be enough time.
Anyway I'm glad that it all worked out for you and, as you say, I think too that I'm lucky - very few side effects and overall a normal lifestyle.
Thanks and take care

Luisa

Hi Luisa,

I wanted to know if you still use this forum? I wrote a post about 10 days ago (similar problem to yourself) but I cannot find it anywhere now. Maybe someone deleted it - no idea.

I was diagnosed start of February this year with CML. I am on Tasigna (Nilotinib) at 300mg twice daily. About 2 weeks ago my platelts dropped to 42 so they stopped medication for 1 week. After 1 week they rose again to 54 so a few days later they put me back on Tasigna (Nilotinib) at the same dose. Tomorrow I have a blood test. If my platelet count has dropped again, they will put me on a reduced dose of Tasigna (Nilotinib) and see how I fair. If that still doesn't help, they said they will try me on Gleevac.

I am worried about this and would like to stay on Tasigna (Nilotinib) if possible, as side affects are not too bad. So, I thought I would ask for your advise based on your experiences.

I hope you are having success with your treatment and you managed to book your holidays! I am in the same boat now, unable to book anything until my platelet count gets better.

I look forward to your reply when you have time.
All the best.

Hi Dav,
I still use this forum occasionally. I tend to read other people's stories rather than posting myself!. Anyway to answer your question: after a week off nilotinib my blood counts started to recover and they did not drop again. I didn't need to reduce the dose. Hopefully yours will do the same.
Unfortunately nilotinib did not work for me and after 6 months I switched to Bosutinib. My PCR has come down to ~2% so I'm sticking with it although I find the side effects more unpredictable. From diarrhoea to nausea to back ache and now very itchy skin, I'm never quite sure what to expect. At least nothing is too bad to stop me from having a normal life.
I hope you will respond well to the treatment and life will return to a more normal keel

All the best

Luisa

Hi Luisa.

Sorry to but in but just reading your latest post.. I am on 400 mg Nilotinib once a day as I cannot tolerate the full dose..
The full dose is actually 400mg twice daily. (800mg) . So 600mg is a reduced dose although I believe many consultants are giving this as a normal dose.
My pcr on 400mg is 0.003.. Hope all goes well.

Hi Steven,

I think you are the first person I am aware of who is on 00mg once daily, although I am sure there are others.
My question is, why are you not required to divide the 400mg into 200mg twice daily as it is always said that you need to keep the plasma level above a certain level which is why the twice per day dose is required.

Its great that your PCR results are so low and stable, even on this reduced dose and only once daily. I am sure that if the company that make nilotinib could find a way of reducing the daily dose to one only, many more people would be prepared to choose nilotinib over imatinib. But I don't think they are near to that as yet.

BTW: the 300mg x 2 daily dose is for newly diagnosed (therefore first line) nilotinib.

Best.. Sandy

I'm not aware of the 400mg once a day either, but it seems to be doing the trick!

The cynical side of me thinks Novartis probably understands how to get to a single dose and maintain adequate plasma levels. When tasigna gets close to patent expiry if no cure is imminent I would not be surprised to see a new patent granted (maybe even a new name) and the price of tasigna then ratcheted up to force a switch to the "new" once a day product. My cynicism stems from gleevec pricing in the USA which is being ratcheted up to force a switch by insurance companies in advance of gleevec patent expiry in 2015.

Taking my cynical head off for a second, I am still bloody grateful for TKIs - even more so after seeing Louis Theroux's series on LA (#2 life on the edge).

Chris