I was diagnosed with recurrent lung cancer (EGFR exon 20) just before Christmas last year and given a prognosis of 18 months to two years. The type of cancer I have meant that I had a choice between platinum based chemotherapy (infusion of carboplatin, pemetrexed and pembroluzimab) or an experimental drug mobocertinib, which I think has just been approved by NICE. I chose the chemotherapy option and haven't regretted it. CT scans have shown that the tumour, which is in both lungs, has remained stable. A problem I have however, is that I had to be admitted to hospital for five day stays on two occasions - once in March and the other time was ten days ago. The treatment affected my neutrophils, which went down 0.5 this time. I had to have intravenous antibiotics each time. I would prefer to avoid having to go into hospital again if I can help it. By the way, carboplatin was removed from my cocktail after 4 cycles, so I now take a maintenance dose of pemetrexed and pembroluzimab. The oncologist said that the plan is to keep me on this regime either until the cancer spreads, or until I can no longer tolerate the side effects.
After this last bout in hospital I am not sure that I can tolerate the side effect of neutropenia. Well, I can tolerate it, but I don't want to. However, with this illness, difficult choices have to be made. I have an appointment tomorrow with the Oncologist, to discuss the way forward. I don't know what he will say, but I am imagining the possible options:
1) Continue with the current treatment regime because it's keeping the tumour stable, and hospital treatment is available if I develop neutropenia again. However, I don't really want more in-patient treatment if I can help it.
2) Reduce the dosage of the drugs - I would be open to this.
3) Remove one of the drugs - I would also be open to this.
4) Pause the treatment for a while, then resume at the current dosage (I don't want that). Or pause the treatment, then resume at a lower dosage. I would be open to this.
5) Offer me the new drug Mobocertinib instead of chemo, which NICE has just approved for my particular type of cancer (exon 20). I understand that this can extend life for say three months longer than chemo. I'm not too bothered about extending my life, although I don't want to cut it short if I can help it.
6) Stop treatment altogether and ask my community palliative team to offer me supportive care to keep me as comfortable as possible.
I apologise that this post is a bit boring! However, it is helping me to think about what I want, and what I can reasonably expect.
I think I have decided that being as comfortable as possible is more important to me now that prolonging my life. However,I don't feel ready to stop all anti-cancer treatment and receive just supportive care, as I don't think I will last very long, given my type of cancer. So I will probably request a reduced dosage of my drugs and/or a pause in treatment. I understand that this will probably shorten my life, but I'm ok with that as long I feel as well as I can.
I think that I have made up my mind about the way forward, by writing this post. However, I would be interested to hear from anyone who wishes to respond to it.