You are here

How to get nilitonib when appointment canceled

My husband had an appointment at the Royal Oldham next Tues to see his haematologist & get his 12 week supply of Nilotinib which has been canceled . The letter made no mention of how to obtain his drugs & the appointment has been postponed 14 weeks. We have tried twice today to speak to the consultants secetary & left a message,but no one has phoned back. We are starting to panic that he will run out of drugs. He only has 1 week supply left.

Could you go to a private doctor (pathologist) to give you a prescription for one month?

Could you go to a private doctor (pathologist) to give you a prescription for one month?

Hi Helena,

The hospital obviously know you’re husbands appointment was approaching it’s date and will know his medication is running low, I would think they will arrange either it to be delivered, or pre organise a prescription sent to hospital pharmacy for you to collect.


Would it be worth trying to contact the pharmacy where you collect your husband’s prescription from and asking if they are able to help you?

I have to collect my medication from the hospital pharmacy who are in direct contact with the doctors.

It may be worth a try.

Good luck.




Hi thanks for the reply ,in the uk only the consultant haematologist can write a prescription for Nilitonib & and is only available from hospital pharmacy

I hope so but to cancel appointment with no mention of provision to obtain meds is very stress inducing

I have had this problem almost every single month for nigh on 2 years, I had to chase chase chase and chase oh and chase. I‘d sometimes get down to 3 days supply of Nilotinib before they came through. In the early days up to 6 months I had to go to the hospital pharmacy to collect my meds after my monthly bloods to find that they were never there!! It drove me nuts. Once I reached <1% (ccyr) I went to 6 monthly testing and have them delivered by health care at home every month. But guess what I have to call them almost every month when I get low. I moan everytime but they don’t seem to give a monkeys.

I hope you get it sorted, annoying but they always come through. I’ve only had one instance in the early days where I was 2.5 days without meds to which my consultant said it’ll make very little difference.

All the best


Yes that is the same for me as in am also in the UK, so the hospital pharmacy should be able to speak to the haematologist for you if you are having issues contacting him/her.

I too have had to chase on many occasions for my tablets and I agree it it very stressful but nothing seems to change.

I hope you get sorted soon.


In Birmingham, there is a "prescribing nurse"  who is qualified to write prescriptions for TKIs. I was told by my consultant that if ever I run short of TKIs, I can get in touch with this highly qualified nurse. Is there a similar approach available in your local hospital trust?

Meds will be delivered to house ,fingers crossed. We spoke to staff this morning at haematology clinic.