My name’s Kira and I work in the policy, evidence and influencing team at Breast Cancer Now.
I’m looking to speak to anyone who has HER2-positive secondary breast cancer and has received the treatment pertuzumab in combination with trastuzumab and docetaxel.
Clinicians are concerned about some patients experiencing challenges with the tolerability of the docetaxel component and would like to make paclitaxel in combination with pertuzumab and trastuzumab another treatment option available for use on NHSScotland.
This will shortly be reviewed by Scotland National Advisory Medicine Group (NCMAG) and we need your help to share our input into the review!
If you’d be happy to share your views please email kira.mcdiarmid@breastcancernow.org by Sunday 9 November. Your views will be shared completely anonymously.
Thank you so much for replying! If you’d be happy to share your experience to help shape our submission please email me at kira.mcdiarmi@breastcancernow.org
My email won’t send for some reason to you so here is my reply.
Hi Kira
I’m currently having Docetaxel and PHESGO for metastatic breast cancer which presented as a large solitary brain tumor very quickly in May 2025.
I have just completed cycle 4/6 of this regimen to target the HER2 positive diagnosis of brain tumour even though original breast cancer diagnosis was HER2 negative last year.
I had a craniotomy at Kings in London in June where they removed 95% of the brain tumour but had to leave some behind as it was embedded in my motor cortex.
Subsequently I had 3 fractions of Stereotactic Radiotherapy at Guys to zap the rest of the tumour which had already started growing into the cavity as it was aggressive.
I’ve just had my first lot of 3 monthly check scans MRI Head and CT TAP and the results are good. There are no other metastases anywhere else visible in my body and the small bit of brain tumour left appears smaller, so it seems the chemo regimen is working.
They want me to stay on PHESGO after the chemo finishes in December for as long as it keeps the mets at bay once every 3 weeks.
Compared to EC and Paclitaxel I had last year my symptoms are very different with Docetaxel. I think because it’s a reduced dose this time my hair is still growing even though it’s slowly and some fell out whereas last year it all fell out and I was bald.
I have also kept my eyelashes and most of my eyebrows. My nails are not as bad as they were last year and I do not have peripheral neuropathy either or bad joint and muscle pain.
I have had a combination of diarrhoea and constipation for a few days and loss of tastebuds and no nasal hair so drippy nose all the time! Generally feeling rubbish and fatigued for a few days after each cycle too.
Let me know if there’s anything else you want to know.
Karen Murray
Hi i was diagnosed with secondary Breast cancer in July last year spread to lymph nodes and the skin on my breast. I have had 4 rounds of docetaxel and 5 phesgo injections. I was originally supposed to have 6 rounds of docetaxel, but I was suffering with bad side effects and neuropathy in fingers and feet, which they are worried will become permanent, as a reduced dose didn’t stop this on my 4th one. Side effects were quite bad from the 2nd day after treatment , felt generally awful, fatigue, no taste or appetite, dripping nose, watery eyes, sore finger tips, nail problems, a continuous infection on my toe, ulcers, headache, diarrhoea and indigestion. These symptoms lasted almost 2 weeks and I didn’t feel back to normal completely before my next treatment was due. I lost my hair, not my eye lashes or eyebrows though. Compared to the pacitaxel and abraxane I had the first time round it was so much worse, although I did not get the joint pain like I did on abraxane. Had my first dose of phesgo without the docetaxel I have still felt fatigue, but I can cope with that. My last scan has shown that my lymph nodes have decreased in size apart from one that has increased but only slightly. My skin has totally cleared of the cancer, which is amazing. I am due a PET Scan in the next few weeks and a CT Scan after my next Phesgo injection, to make sure its working on its own, fingers crossed, it frightening to think it could just stop working and the Cancer could pop up in some other place at any time.