You are here

Nilotinib - what to expect when taking it

A Happy and Healthy New Year to all fellow CMLers!!

I've been on Glivec for over 5 years, started on 600mg and got reduced a year ago to 400mg, doing great on the reduced dose with only the usual side effects.
I've found this site over the years invaluable, especially in the early uncertain days.

The reason Im posting is that my neighbour has been diagonised with CML and has just started
Nilotinib. I would be grateful to anyone who's on this new treatment on what to expect when taking it. He's only been on it for the last 10 days and so far thing are going fine.

I dont know anything about this new drug or I dont know any other people who are taking it so all views would be appreciated. As far as I know my neighbour is on a trial, so is being carefully monitored.

We are both been treated by Prof Michael O Dwyer in Galway.

Thanks in advance
Patricia

Hi Patricia

Just how amazing is it, that neighbours have CML

Is this a co-incidence or is this a health spike

Where I live my GP has a clinic and the clinic has 7 GPs
with a patient list of over 12 000 people - and only 2 have
CML and not within the same region

Both of us are treated by the same CML specialist who comes to the regional centre - from the main Capital City and at the same treating hospital.

Many people are now doing great OK on all three drugs -
however as with glivec - there are side effects

I hope your neighbour is going to do well and you continue to do so

How incredibly lucky your neighbour is by having your support in the early days of CML diagnosis and looking out for each other.

Sue (Aussie)

I have been on Nilotinib for a month having battled with side effects on Glivec for 18 months. After 4 days I developed a rash that started on my face and has since spread to the rest of my body. I guess it is too early to say what the long term on Nilotinib will be like but I do wish your neighbour well. Rachel B.

Hi Partricia, I to have just started on Nilotinib (due to intolerance of Glivec after 18 months as well), but had to have a 10 day break fron it as after 9 days I developed a major skin reaction which nearly resulted in hospitalisation. I am now on a reduced dose of 200mg for a week then back up to a normal dose. So far I have been rash free!
I must say that other than the rash which has driven me mad, I have had no other side effects, which is fantastic and I feel so much better in myself.
How are you finding the regime of no food for 2 hours before & 1 hour after dosage going? I havent had a problem with that as I take my meds at 11 am & then 11 pm so it fits in quite well with my life style.
I wish you all the best with your treatment.
Ali.

Patrica,
I have been on Nilotinib for 15 months now. I to have a rash pretty much all over my body (not on the face) but it doesn't itch so my oncologist isn't real worried about it. I do get some leg pain associated with it but not nearly as much as I did when I was on Sprycel. I haven't noticed any stomach issues either which is nice. You do need to fast for 2 hours before you take it and one hour afterward. But that isn't that bad to adjust. I take mine at 8AM and 8PM. I am on 400MG twice a day.
I hope this helps,
Chuck

Thanks to all of you who are willing to share your experiences with the 2nd generation inhibitors on this forum. Sharing stories and experience of side effects is an invaluable way to help not only ourselves but others who might need to consider a change of therapy in the future.

Sandy

This is a very hyperthetical so perhaps no-one will really know the answer

If you have very sensitive skin issues that one has
from glivec - if changing to one of the second drugs
would that also make one skin sensitive - if all or both
new drugs give a whole of body rash which some of the
other cml patients have experienced

Sue

Hi Patricia

I started on Nilotinib six months ago as a first course treatment (having been diagnosed with CML last May). I initially started on 300mg twice a day and had to stop it twice due to side effects (bone pain throughout my entire body and liver problems). However, on my third go the doctors reduced the dose to 400mg once a day (am) together with a steroid called Prednisolone at 25mg a day for about three months. This helped with the side effects greatly. Now I take just the Nilotinib once a day at 400mg and have only mild side effects (tiredness, constipation and some muscle pain). The drug is working extremely well and I am close to being in remission.

Please tell your neighbour/friend that in my experience it is a wonderful drug and appears to work really well. If either of you need to ask me any questions, please feel free to do so.

All the best,

Maureen D (London)

Changed to Nilotinib in Jan 2008 after nearly 6 years on Glivec. My skin issues on Glivec were pretty bad, rash, dry flaking very thin skin, every tiny knock meant a tear and possible infection. Since changing my skin condition is much improved, and the dry thin skin issues completely resolved. I do have a rash, but bearable - except when I get the spots on the end of my nose!! It does itch but no too badly. Nothing like as terrible as the one I had on Glivec.

My experience is that my sensitive skin ( I always had sensitive skin even prior to CML) is far more manageable on Nilotinib.

Big shame that Nilotinib is not kicking Lukie the Dragon into his lair - I still can't get to that much wanted zero. BMB next wed to see if there is anything 'lurking' in the shadows.

Pennie.

Hi Sandy,

Something is amiss with this thread. All the posts seem to be 2 years old.

Zavie

Hi Zavie.... as often happens these days, old threads are used to insert spam messages. In this case their was a new post that mentioned a steriod preparation used to treat skin rash. I have contacted the person and informed them that new posts should not be inserted in old threads as it is confusing. I have informed the person involved that I have deleted the post. It is very difficult to make a decision about who is a spammer and who is genuine - but sometime I have to just make a judgement for the good of the majority.

I am rather disheartened that companies employ people to target cancer patient forums like this one in order to sell..... but it seems that some people have no scruples.

Best wishes,

Sandy