Enhertu - can anyone help?

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Hi I’m new to this forum.

I was diagnosed with non small cell lung cancer HER2 with mutation on 1 September 2021 when I was 56 years old. I have mets in my brain I am being treated in the UK and my oncologist wants me to try a drug called ENHERTU- this drug is not available on the NHS and so he has applied to the pharmaceutical company on compassionate grounds to get me this drug and he has been refused it, because although it is approved for use in Breast cancer it has not been approved for lung cancer in the UK. I believe it has been used successfully in the US for lung cancer. I am waiting to find out how much it costs privately.

I would be extremely grateful for any information anyone has on this drug.

Thank you so much

chellesimo over 1 year ago

Hi MIssie welcome to the group, but sorry you find yourself here. As ENHERTU is not yet available on the NHS for lung cancer, I don’t think any of the members here will have had experience of it. I have done a search of ENHERTU on the site, and I can see a few posts on the breast cancer site. You can see these by going to the Breast cancer forum and popping ENHERTU into the search bar at the top of the page.

This must be so frustrating for you. I hope it will be possible for you to get this treatment privately, although I am aware of how much these drugs can cost.

Please do let us know how you get on. X

Chelle

Try to be a rainbow,in somebody else's cloud

Maya Angelou

MIssie over 1 year ago in reply to chellesimo

Hi Chelle

Thank you so much for taking the time to reply.
The little research we have done so far leads us to believe that it has had some success with this type of cancer and also the professor who is treating me believes it will be beneficial, this is why we are trying to find out more. If he thinks I need it then he obviously has good reasons.

I find it really frustrating that I can potentially find myself sitting next to a breast cancer patient who is on this drug and yet I am not allowed it. We are also exploring other treatments but will continue to fight for this one - I will keep you posted!

To everyone who is living this cancer nightmare - stay strong, stay positive and stay well x

Elaine

kiki over 1 year ago

Hi Missie, I stumbled on your message here while I am researching about the use of Enhertu for lung cancer in UK. My mom of age over 70 is taking this medicine for her stage 4 NSCLC after failing in other therapies including Keytruda, with very encouraging results. She is currently located in Hong Kong which approves the use of Enhertu for NSCLC. I am also interested in finding out if it can be available in private practice if not from NHS as she wishes to relocate to the UK. Any positive updates on your search?

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