This post will be an update on the first four cycles of ipi/nivo. I’ve been having it every three weeks, by infusion, from mid Jan until the end of March 2022.
On day 1 of my ipi/nivo I predictably had a dozy session on the sofa in the evening which I understand is quite typical. Plus having cancer, I’m not immune to falling asleep on the sofa and feeling tired, anyway.
After my treatment started I found I started to feel normal again. \o/ I had lost over a stone (6kg) in weight, and I gradually put some of this weight back on. My appetite increased, I stopped feeling so cold all the time, but I was thirsty and I was drinking so much tea. I felt so good that I stopped the lansoprazole, both the evening and the morning dose. I picked-up running again, twice a week. I had also been going to bed a lot earlier before treatment, (ridiculously so) but my old nocturnal habits were restored in this period. The night sweats became more infrequent.
I waited for the side effects, the sickness or the diarrhoea to kick-in, but nothing. I did the temperature monitoring for a bit. But one evening I was having a night sweat and my temperature was almost 38 and I had a dilemma. What to do? They say to phone the emergency number (>37.5) but it was 9:30pm at night. Much deliberation with hubby. I was worried I would be advised to go to A&E. We were certain it was not an infection and decided not to phone. When I was next in the haematology/oncology day unit, I told them and the nurse specialist just said “oh really?!”, not battering an eyelid! After this I just stopped the monitoring.
I did experience some itching on some old eczema sites and my lower legs. I carried a bottle of hand cream around for continuous application. Some areas I broke the skin, but it was nothing that merited escalation.
My oncologist was delighted with how well I was tolerating the drugs, advising that many people do experience side effects of some kind. The nurse specialist had some interesting experiences too and advised that people generally tolerated ipi/nivo well. Ha!
Roll forward to the end of March and it was time for my first monitoring scan. I was aware that the first scan is frequently inconclusive showing pseudo growth as the drugs slowly start to have an effect. But I was also confident with the change in my general wellbeing that the drugs were doing their thing. We had the meeting over the phone so unfortunately I wasn’t able to see the pictures. Both the kidney tumour and the lung metastases showed some shrinkage. I became my oncologist’s top patient and now at risk of something else other than the cancer getting me in the end, he advised. I suppose people might find this the best news possible. But having been prepared for an “inconclusive” result, and going from a 5 year prognosis just 4 months ago, I kept my feet firmly on the ground. I think this is just indicative of the see-saw events that I need to be prepared for with cancer and a pragmatic middle ground approach has to be found.
Having the confirmation that my treatment was having the desired effect, did make me re-evaluate some of the life choices I had made, but not actioned. Perhaps having a bit longer to come to terms with everything was also a factor. I had decided to give up work, but I hadn’t found a way of doing it that would give me the privacy I wanted. I don’t see myself as a cancer awareness pioneer in my workplace or @bowelbabe. @kidneybabe?! But if I was going to live longer, then I started to consider whether keeping my toe in the door, and working 3 days a week would be a better compromise. Delay the Big Decision until later!
Finally my oncologist tells me he is moving on to a new role in the same unit and he’s handing over his List to his replacement over the next few months. Not impressed! I thought I had the oncology team in place who would advise me to the end game. It’s another Change and I’ll have to start again and build a new relationship with my new oncologist. I have met so many doctors over the past few months that you get tired of the getting-to-know-you stage. I'm told he is lovely (of course he is!) and it’s likely he’ll be in the role for many years. I just think it’s unreasonable to change job right now, just after we’ve started working together . . . . . this is tongue in cheek of course. 
I was sad when my ipi/nivo initial cycles ended. I am a big fan of this treatment and I don’t want anything to change. Now I have my 6 week treatment break after which I will start the nivolumab monotherapy on May 4th.
Well, that’s the plan . . . . . . . .
