information on Nilotinib

Nilotinib does have the potential to be hard on your heart, compared to imatinib. For this reason, in the hospital where I am treated, they are actively moving people on from nilotinib to other options. It would not be usual to move a patient to nilotinib, at least where I am treated, unless there were very good reasons and other options were ruled out.

David.

Hi Evie,

I can't advise about an imatinib/nilotinib change, but I have kept a close eye for some years on the question of different side effects from different generic imatinib supplies. Different people have different impacts, but overall from many threads on this subject over the years, the one which seems least likely to cause issues in Sandoz. This is not a surprise as Sandoz is the brand name for generic drugs of Novartis, who did the original development of Glivec, which was their brand name for imatinib. I am currently getting Sandoz imatinib, supplied by Alcura, from a prescription from my consultant in Chester.

Hi,
In response to your replies regarding the effect of Nilotinib on the heart if you look at the proceedings of CML Horizons 2024-videos and presentations posted on this site. The evidence is now piling up re potential cardiovascular issues with this second line tki-see the pdf of slides from Natalia Lopina in her presentation on Day 2 titled
"Monitoring Cardio-vascular Health in CML patients ".She is also the author of a learned journal article on the same topic.
I would suggest that we are now seeing some of the results of long term effects of tkis on patients -I have been on imatinib now for 17 years but guess a few in UK have been on it for 22 years since its introduction into UK in 2002.How long has nilotinib been around in UK -it had FDA approval in US in 2007.
Jane Apperley from Hammersmith some years ago warned of the adverse effects of nilotinib on the heart.
In respect of generics there is also a useful treatise from CML Horizons by Nick Duncan on" Generics and Drug Interaction perspective"-the most comprehensive review that I have seen to date.
I dont think that you should expect all NHS hospitals in UK to be up to equal speed with their knowledge of tkis and treatment guidelines for CML as it is a rare form of blood cancer with probably about 750 new diagnoses per annum and some haematologists in small Trusts have only a few CML patients;some GPs have never seen the condition.CML apparently forms about 15% of all leukaemias.
I am on Sandoz as my consultant maintains that it is the closest drug to the original branded Glivec-the brand name comes from the original company that merged with Ceiba-Geigy to form Novartis in the mid 1990s (who as we know developed Glivec)
Regarding Accord I was under the impression that the NHS had done a confidential deal with the producers of this drug as it is reputed to be one of the cheapest imatinib generics on the market.In addition it is often complained about as the one with the substantial side effects versus say Sandoz.
Regards ,
John

Hi Joey, I've been on imatinib for most of the last 17 years.

This thread https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po... documents my attempt to reduce dose and get to TFR (treatment free remission) and might be useful to you. Basically most of my BCRABL results are now zero or very close to zero, and I'm on 200mg, and have minimal side effects. When you get very close to zero and keep at that level for a couple of years dose reduction from the standard 400mg is worth a discussion with your specialist.

best wishes

Alastair

Ho Joey,
Many haematologists will tell you that in their experience imatinib is still for many the best choice tki-for what reasons ?
-Dasatinib has an issue with pleural effusions (1 in 5 suffer this and it is quite nasty with either needles to drain and/ or ceasing treatment) but a lower dose may help
-Nilotinib is hard on the heart and may well lead to arythymias and other problems
-Bosutinib can raise cholesterol and also blood pressure alarmingly in some cases.
-Ponatinib can counter some of the hitherto untreatable deadly mutations that may arise BUT it has a black box warning on it due to cardiovascular risks and events-so dispense with extreme care.
-Asciminib is new and in UK NICE will only allow on the NHS if two previous tkis have failed(it is the most expensive of all at about £45k per annum in the UK (NHS has special deal though)
So for the time being imatinib may for some pose less risks than the alternatives.So if speed of molecular response is your target then 2nd generation and other generation tkis may be your choice.If speed of response eventually affects your ability to be successful with TFR then may be this is a significant benefit-we dont know ?
Re long term effects we are still not sure about impact on
-liver
-kidney function especially filtration rates
-musculo skeletal and nerve related issues:non diabetic peripheral neuropathy and muscle inflammation/extreme cramping
-gastro intestinal disfunctions like diverticular disease
-eye disturbances
-other comorbities like prostate and breast cancer(effect of CML and /or the tki?)

However without the availability of tkis then one would be on interferon alpha by injection each week (horrible side effects) awaiting the final spike in the bcr/abl score prior to the accumulated and blast phases kicking off.
Essential reading still is the book by Jessica Wapner titled "The Philadelphia Chromosome"which catalogues the research that went into developing the original Glivec and the fact that" big Pharma" Novartis decided in the late 1990s to to run with a drug (called STI -571) that would only treat a very small population of people as CML is a very rare cancer.
Best wishes
John

Hi David,

Would it be possible to find out what area or hospital you are under in the uk.