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Licensing new drug Tucatinib (TUKYSA), from HER2CLIMB trial

3 REPLIES 3
nicky08
Community Champion

Re: Licensing new drug Tucatinib (TUKYSA), from HER2CLIMB trial

Hi Jacque, I realise I didn’t reply to you after you’d asked me some questions - how rude of me! I will send you a PM.

Nicky x

Jacksy
Member

Re: Licensing new drug Tucatinib (TUKYSA), from HER2CLIMB trial

Hi Nicky,

Great to hear from you, and I’m so glad to see you’re still around and contributing so much to the forums, as usual. That’s really helpful information about how you got access to your drug, thank you. I will certainly look into that route. How are you doing at the moment? I’ve lost track of where your mets are and how they affect you. 
I decided to take early retirement nearly two years ago, and it’s been the best thing! I’m now studying for a crafts Degree part time (pottery, jewellery & textiles) and spending time with my adorable grandson, so life is good. I’ve been pretty well on Kadcyla and I keep active. It’s only the mild but irritating side effects and fatigue that affect me. I feel very fortunate when I know many other women with SBC have such limitations to their everyday function. 
I hope you’re keeping generally well too, do let me know 

take care

Jacquie

nicky08
Community Champion

Re: Licensing new drug Tucatinib (TUKYSA), from HER2CLIMB trial

Hi Jacksy

Good to hear from you, but not the circumstances.

I think we are a similar number of lines down the treatment path as we’ve been living with SBC for many years, although we do have different pathology of our BC. I have been in a similar situation recently and my oncologist wrote to all the pharma who manufacture the inhibitor drugs as I’m not eligible to have them through the NHS (I’m too far down the line of treatments). I think he must have mentioned ‘compassionate grounds’ as the basis for his request. Two of the companies responded to say they would fund my treatment themselves thus not involving NICE or the drugs fund. I’m currently on a PI3K inhibitor drug direct from the manufacturer. The costs are enormous if I were to fund it myself (the other CDK inhibitors are not quite so expensive). It too has been licensed in other countries, only last November so is a very new drug and only available on a trial in the UK (which may have finished). It could be worth your oncologist approaching the manufacturer of the new drug to see if they can help?

Wishing  you all the best

Nicky xx

Jacksy
Member

Licensing new drug Tucatinib (TUKYSA), from HER2CLIMB trial

Hi all,

Please does anyone know anything about this new drug for secondary BC Her2+ patients?
It’s added to Capecitabine and herceptin, and apparently showed good results. The trial has included some UK hospitals (including Mount Vernon, Middx) and it was reported in the New England medical Journal last December. It’s already been licensed in the US, Australia, and Switzerland this summer and is currently going through the European Drug Agency for approval. Unfortunately Brexit will probably cause delays 😞

My onc feels it would be my next best step as Kadcyla is starting to fail after four years of stability, but I don’t know if I can wait as I have no idea of the timescales Involved. It will have to get through NICE too! 
So what I want to know is, does anyone have any experience of this, or has anyone been recommended this treatment recently, or can anyone point me towards sources of information about the European Drug Agency’s processes, and especially how Brexit will affect licensing?

I have two weeks until I talk to him again and may have to accept a less promising drug combination.....

Many thanks for any info

Jx