Hope

1 minute read time.

The immunotherapy rash settled down quickly with the various pharmacy grade products, and I was cleared to have my fourth dose of Pembrolizumab on time. I have been busy telling my body to stick out the red carpets to invite the drug into zones 6 and 8 of my liver (where my secondaries are), whilst ignoring my skin and any organs that correctly use the PD-1/PD-L1 pathway to create an immune privileged zone. I am not sure my body understands this complex request. I guess I am going to be spending the next few weeks inspecting my body for early signs of rash. My neck and upper chest still look a bit sunburnt and my right boob is still a little pink. Unfortunately the right boob is the one where it all started, and surgery and radiotherapy have left it rather worse for wear. It still looks normal in a bra, so I guess I got away lightly in that respect. 

I had my liver MRI this morning. 7:45am appointment, asked to be at the department at 7:30. Doors firmly locked, no-one to be seen. Eventually an arriving nurse let a small number of us in. The liver MRI is a 30 minute nerve jangling procedure, which I have described before. This was my 4th experience, so nothing new to report, an identical set of steps to the previous 3. MRI #3 was my baseline before starting my current Pembrolizumab and NAB-Paclitaxel regime, and it identified that the larger tumour had developed satellites. I am hoping I don’t have a whole constellation in there this time round.

Keynote-355 was the clinical trial that led to NICE approval for my treatment protocol. The treatment is offered to people with metastatic TNBC who pass the threshold of having a combined positive score (CPS; the number of PD-L1–staining tumour cells, lymphocytes, and macrophages, divided by the total number of viable tumour cells, multiplied by 100) of 10 or more. 52.7% of the patients with a CPS of 10 or more in the pembro+chemo arm of the trial achieved an objective response to the treatment.  That’s the piece of hope I am holding onto. I have a CT scan on the 15th and see the consultant on the 21st. 

Anonymous
  • I admire your strength, positivity and resilience, Coddfish, and wish you well as you continue with your treatment. I expect there are days when you don’t feel so strong and positive, and am sending you special love for those days xx

  • Oh wow Coddfish, you are amazing and like Amy123 I admire your strength, positivity, and resilience. I’m also in awe of your determination and dedication to the research you’ve done to keep on top of the possibilities available for trials and adjuvant treatment, which more often than not just aren’t offered if not specifically requested. 
    I wish you all the very best for your next scan and appointment, just days away now. Much love and healing thoughts and prayers winging their way to you too.

  • Thank you both for your kind thoughts. I know the general advice is not to google, but I have a mathematical/ scientific background, so am drawn to research and its outcomes. I don’t know why, but I can read quite dispassionately through research papers involving my specific situation and understand the implications for me. Yet I never want to ask my oncologist for her opinion of my prognosis. As someone who worked at Executive level before retirement, I am never afraid to self advocate or find other people in the field to give a check and balance. 

  • I too believe in research, but had little response or interest from my oncologist concerning anything ‘off piste’ ie other than the NHS protocol, even though in the end, I had to call on my medical insurance as there was such a long and uncertain delay for chemo. She told me my prognosis at my first appointment, without asking whether I wanted it, and which I certainly wasn’t expecting…. 
    Will be more proactive if there’s a next time, although not sure I could go through chemo again…..

  • I haven’t tried to step off piste, I am being treated with a NICE approved treatment protocol for my cancer and stage. The immunotherapy (Pembrolizumab) part of it was fairly recently approved for triple negative breast cancer and isn’t authorised for hormone positive or HER2 positive breast cancer yet (clinical trials are underway for those). Something like 40% of TNBC tumours have the relevant protein for the treatment. So it was new to my oncologist as she is a breast cancer specialist (I am 1 of 2 patients she has started on it). She was however well aware of it as she is the overall clinical lead for oncology at the hospital and it is well established for some other types of cancer that use the PD/1-PD-L1 pathway. I got a lot more insight by talking to a family contact who is a melanoma oncologist in a different hospital. 

    Sorry you have experienced delays, I think it can be a bit of a postcode lottery. I hope you don’t have to go through chemo again.