Another 3 months has passed. Another scan. Another anxious wait for results. Each time I go through this, my level of expectation of a good result is higher and therefore my fear of a bad one is worse. But I had nothing to worry about, as it was clear again. It’s now 15 months since I had to stop immunotherapy due to severe collateral damage, and 10 months since the tumour residues were ablated.
I am in the unusual position of there being little real world data on progression free survival of metastatic TNBC following treatment with Pembrolizumab. There is the limited dataset from the clinical trial that led to NICE approval, but not much else, as it hasn’t been used in clinical practice for mTNBC for long. I was one of the first 2 patients in my hospital, and if I had been able to stay on treatment for the whole course, I would still have had 4 more months to go. I found one recent retrospective analysis looking at Pembrolizumab for all eligible cancers, and gleaned from that that progression free survival is typically higher in those who sustain a grade 3 or above IRAE, as I did. I have a contact in another hospital who specialises in melanoma, where Pembro has a longer track record. She said you can’t tell, some people stay clear and for some it comes back. My own oncologist’s starting point, based on years of experience of what happens with chemo driven remission, has the somewhat downbeat view that TNBC is tricky and always comes back. I live in hope that experience of immunotherapy will change that view.
Meanwhile, because TNBC is tricky, I am stuck indefinitely into the 3 month scan and watch and wait cycles.
Meanwhile, because the IRAE left me with a shed load of intractable inflammation, and I am 6 months free of the steroids that managed it, I continue to live with stiff and painful joints, neuropathy down my left sciatic nerve, abdominal wind, and a level of kidney, thyroid and lung damage. I have been experimenting with ibuprofen dosage - as ibuprofen is the only thing that brings a measure of relief. I am able to take a couple of slow acting tablets in the morning, without negatively affecting kidney function. I then use some gel on my spine (where the sciatic nerve is) before going to bed. Evenings are often very uncomfortable. I have tried to get back into running and am hampered by the lungs and leg. Activity in general has to be limited, and generally undertaken in the morning. I would like to think this is helping, but feel my pain and mobility is in a steady downward spiral which can perhaps only be resolved by eventually going back on steroids. I am resistant to that at the moment.
I am astonished to be approaching my 3rd anniversary of this - the mammogram that started it was early January 22, with formal diagnosis, following biopsy etc on 14 Feb 22. When I first realised, in September 22, that I was metastatic I thought my days were seriously numbered. When I became very ill with my IRAE in September 23, everyone thought my days were numbered. But I now have serious hope that pembro has fixed this for me, even if it has also compromised my quality of life. Only time will tell. TNBC is tricky but it hopefully met its match.
