Yesterday was treatment day 1. Pembrolizumab plus NAB Paclitaxel. I have been given a treatment schedule running all the way to December. There is treatment on all but 4 Fridays. The Paclitaxel has one week off in every 4 but still they are planning to put almost twice as much Paclitaxel in me as I had last year - and I am still feeling the consequences of last year’s treatment in my fingers and toes. Seeing the extent and relentlessness of it all (even though I knew it was coming and had worked out the lack of down time) is so dispiriting. I think I had about 1.5 days of ‘normal’ in each week of Paclitaxel last year, and when I look back at my notes and count up the bowel problems, the days with loss of taste, I find myself at my lowest point since I first found out I had secondary cancer. I have bought some good quality fillet steak for tonight, I intend cooking it really rare how I like it, ignoring all the chemo dietary guidance. I just hope my sense of taste holds out for another hour or too.
Pembrolizumab is an eye opener. The NHS have purchased it with a commercially confidential discount, but the list price is almost $11,000 per 3-weekly dose. Merck (the manufacturer) made over $20,000,000,000 in revenues from Keytruda (Pembrolizumab) in the financial year ended 31/12/22. Block buster drug or what. It’s had over 6 years of sales for some cancers, with new authorisations for additional cancers and additional geographies being added all the time. All this information is public domain, on Merck’s own website. I quite understand the development costs of something like this must be astronomical, but you have to wonder quite where the market for cancer drugs is heading. I am obviously very grateful to get a shot at finding out whether it works for me / my cancer.
Underneath all this, I am now starting to have some discomfort from the liver lesions. I often feel like I have stitch, and it’s very difficult to lie comfortably on my right hand side because I get pain referred up into my shoulder and neck. So without doubt it’s time to go back on treatment.
it has been difficult telling people about this development, and particularly difficult dealing with people’s lack of understanding of metastatic cancer and of less common subtypes of breast cancer - PD-L1 positive triple negative is a touch difficult for people to get their heads around. I got my hair cut really short again before chemo and the hairdresser was banging on about grapefruit. I zoned out, not sure whether she thought it was a cause or cure. And whilst I know people mean well, I get fed up of the “can’t you just…”. Eg “…have a mastectomy”. That would do a lot of good for tumours in my liver. “Have a liver transplant”. Yeah, right, let’s get on the list now shall we. “Take hormone blockers”. Which bit of triple negative did you not understand. Yes, I am grumpy today, it’s probably the chemo.
The day on the unit went as well as expected. Switching from Paclitaxel to NAB-Paclitaxel removed anti histamines and steroids (thank goodness for the latter). And the Pembrolizumab hasn’t caused an immediate immune system breakdown, although my skin is very itchy today. One day at a time, hoping I am less grumpy soon.
