Progression

[Cherry38]

Hello ThriversI was diagnosed last year stage 4 de-nova at 49.

Er,pr + her 2 negative, pik3ca mutation.

I started on Tamoxifin, Riboclicib and Lextrozle with zoledex and deconsumb injections.

I got more progression, I then went on my first clinical trial xeolda and had an oophorectomy so I could stop the zoledex.

I got more progression.

So I went on a second clinical trial which I had to travel just a 4 hour round trip to try piqray and fulvestrant unfortunately again I was taken off this trial, this week due to progression again.

I have had a few rounds of radiotherapy on my spine and ribs and intensely on my primary breast tumour as it was protruding out of the skin.

Iam now waiting to see my oncologist to see if I can have another biopsy to clarify if my first diagnoses was correct or if the cancer is changing as nothing in 14 months has worked.

Has anyone else ever experienced this.

Thank you and you are all in my thoughts and prayers 🩷

[Silver126]

Did they suggest you Piqray? It’s specific for PIK3CA mutation.

[Cherry38 in reply to Silver126]

Hi silver126, hope you are well.Yes the piqray is specific for the mutation, my first clinical trial was xeolda and piqray, I was picked for the chemo arm but it didn't work anyway, got more progression. So I travelled to another clinic 2 hours away to get on my 2nd clinical trial which was two for the pik3ca I was put on piqray which was then standard treatment against inavolisib and fulvestrant. I am from the UK but live in Australia. I did get tested in America with my bloods other mutations, which I only found out the other day from my medical team so ESR1 was mentioned. I am hoping for another biopsy to double check if things have changed and I need to find out all my tests from the trials, I feel sometimes the patient is the last to know. Which for me is annoying as I am the strongest advocate for my cancer. 🩷

[HelenWi in reply to Cherry38]

It’s a good idea that you’re getting a biopsy to see if you have mutations. I hope the results suggest a good treatment for you.

I’m wondering why you had to get on clinical trials to use Xeloda and Piqray. Are they not standard of care in Australia?

[Cherry38 in reply to HelenWi]

Thank you Helen, unfortunately Piqray isn't on our pbs so I had to join two trials to get on it, first one I got the standard xeolda, but the 2nd one I finally got on the piqray, unfortunately it didn't work for me. It's very exhausting getting on trials in the first place. Our oncology care is fantastic as well as the health system just treatments seem to take longer to accepted. Hopefully I get the biopsy soon as I am now waiting without treatment and last time this happened my cancer progressed too. I hate the limbo feeling of what's next. Hope you are well. 🩷

[HelenWi in reply to Cherry38]

I understand that it’s hard not to have a plan. I hope you get one soon. Ibrance didn’t work for me so I’m on Piqray now. It first reduced the bone mets but subsequently has had mixed results. Overall things haven’t gotten worse, so he’s keeping me on it. I often wonder if it’s Piqray that’s helping or Faslodex. Living with uncertainty is definitely something we now have to do. It’s hard for me because I like to understand everything.

Here’s to a quick biopsy and a good plan for you! Try to enjoy this down time without drugs.

[Andersl]

Hello brave lady

What a lot you've been through in a relatively short time.

Push for that oncologist appointment as soon as; then push for the biopsy as soon as. It does sound as if a reassessment of the tumour is the way to go.

Wishing you all the best. Please keep us updated.

Louise x

[Cherry38 in reply to Andersl]

Thank you Louise, I see my oncologist next Thursday, Hopefully I get in for a biopsy as soon as possible. I was off treatment for 36 days between clinical trials as I had to have radiotherapy and in that time too I got progression more in my liver. It's quite worrying as it's agressive, I seem to be waiting again. I understand there are procedures but I feel quite isolated sometimes. But onwards and upwards I have two beautiful teenagers who need their mom so hopefully there are more treatments to be had. Hope you are keeping well lovely 🩷

[Andersl in reply to Cherry38]

I'm ER/PR/HER2 positive.

it's 5 years since I discovered my lump. On investigation I was stage 4 de novo.

I've had several progressions but the treatments that have/are working best are those specifically targeting the HER2 protein. As you're probably aware HER2 is an aggressive type of breast cancer for which there are now many effective drugs.

My relapses have been in the liver, lungs and brain. The latter treated very successfully with Gamma radiotherapy. In case you're not aware, to be eligible for Gamma the areas for target need to be within certain limits. My advice would be to mindful of the symptoms, and get 3 monthly brain scans if possible so if disease spreads to the brain you're on it!

Ps: 2 x Gamma plus one session of brain sparing radiotherapy and still got my cognitive function. Memory a bit off the mark sometimes but at 66 and 5 years of non stop chemo I think that's incredible.

Xx