Next steps after Phesgo stops working

Hi Stage4,

Thank you for contacting Macmillan Cancer Support. My name is David, one of the Cancer Information Nurse Specialist’s on the  Macmillan Support Line.

I am sorry to hear of your HER2 positive metastatic breast cancer diagnosis. It is sometimes also known as secondary or advanced breast cancer.

It is only natural that you would have these types of questions around treatment options. I’m glad to hear that you are currently responding well on Phesgo.

Enhertu is like most regimes in that there is always the potential for possible side effects but that does not mean we expect you to get A-Z on that long list of side effects.

You may experience some side effects but for as long as you report this to your team as soon as they occur then they are normally good at helping manage that.

When managing people with advanced breast cancer, Consultants are guided by NICE pathways and local protocols.

Treatments continue to evolve and some may even be awaiting approval for license once recommended for use.

There are many targeted therapies and treatment options and we would encourage you to have a further discussion with your Consultant to see what options might be best suited or available to you. You may also want to ask if any clinical trials would be an option.

It is really important to explore all possible treatment options available to you so you can make an informed decision. Remember, you are in control as they cannot proceed without your informed consent.

That said, some people may even consider withdrawing from treatment to concentrate on quality of life for the time they have left. If you decide not to have treatment, your decision must be respected.

You may find CRUK and Breast Cancer Now are also good sources of information and support going forward.

If there is anything else we can help you with please feel free to get back in touch.

Best wishes

David, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

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Copy of your original e-mail to Macmillan Cancer Support

Hi, I was diagnose with Her2 positive metastatic breast cancer last November.  I did 8 rounds of Doxi along with Phesgo every three weeks.  I am currently just on Phesgo every three weeks.  The metastasis was to my liver and lungs.  PET scans show no evidence of disease for the time being.  I know that Phesgo has a time when it stops working.  I have has consults with MD Andersen and the step after Phesgo at the time I spoke with them was Enhertu.  The side effects for Enhertu sound miserable and I am trying to decide if that will be an option for me due to quality of life.  Is that still the second line treatment as far as you know?  I realize they are coming up with new treatments all the time.  I have consulted my doctor and that is her second line go to but I was hoping there is something coming down the line that is less harsh.  In total I have had 15 chemo treatments in the last 5 years with both dx's and I don't know if I can do any more.

Hello Stage4,

Welcome to the Macmillan Online Community Forum. I’m Kirstine, one of the Cancer Information Nurse Specialist here. I can certainly see that you are going through a lot right now and I’m sorry you are in this position. It’s understandable that you might be looking for information from various places. On reviewing your enquiry though we weren’t sure if you were having treatment outside of the UK as you mentioned advice from MD Andersen who we know are based in the USA.

I can see that my colleague has replied to you and offered some advice. We need to mention in addition to this, that this relates to cancer care in the UK. As a UK-based cancer charity, we cannot offer medical advice that is not about UK cancer care.

If you are abroad, you are welcome to access information on our website about UK treatment for cancer:  https://www.macmillan.org.uk/cancer-information-and-support

We can answer questions if you are based outside of the UK but have a question about a person with cancer receiving treatment in the UK. You can also contact us on  +44 207 091 2230 with questions about cancer care in the UK.

If you are receiving treatment in the UK we can happily chat with you again here on our Online Forum, or via our Support Line.

And of course, we wish you the very best moving forwards and in your discussion with your specialist team.

Warmest regards,

Kirstine – Macmillan

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf